The Joys and Challenges of Raising Children With Special Needs

Southern Living Turtle Bars

2012-01-08T11:24:00.000-05:00

ingredients

• 2 cups graham cracker crumbs or vanilla wafer crumbs

• 1/2 butter or margarine -- melted

• 12 oz semisweet chocolate chips

• 1 C pecan pieces -- chopped

• 12 oz jar of caramel topping

directions

Place graham crackers in a large heavy-duty zip-top plastic bag; crush with a rolling pin to fine crumbs.

Stir together graham crackers crumbs and butter; press into bottom of 13 x 9" baking dish. Sprinkle with chocolate chips and pecans. Drizzle with caramel topping.

Bake at 350 degrees for 12 to 15 minutes. Cool in pan on a wire rack. Chill 30 minutes. Cut into 1 1/2" squares.

Source: Southern Living Magazine

National Eosinophil Awareness Week - Day 3

2011-05-17T20:59:00.000-04:00

Today Andrew and I wore our Eos T-shirts to school. We also passed out dum dum lollipops to help spread awareness for these disorders. I was pleased when several teachers asked me what my shirt said and I had the opportunity to educate them, if even just a little, on EGIDs. The student's in Andrew's classroom (and mine as well) were full of questions. I continue to be proud of how well Andrew handles his disease and now of the advocate he is becoming. It is so very important for the people that are suffering from this disease that awareness is spread. Please take time to write to your congress person tomorrow to remind them that this is National Eosinophilic Awareness Week.

Thank you to everyone that continues to support us!

This is a video put together by another Eos family.

Just......Imagine a Cure!!

National Eosinophil Awareness Week - Day 2

2011-05-16T20:51:00.001-04:00

Today is the second day of National Eosinophil Awareness Week. My goal was to post something each day no matter how busy I was. I have already missed my goal, but I am going to work hard to obtain it for the rest of the week.

I feel it fitting to start this post with an update on Andrew's status. Andrew began food after 9 months of an elemental diet last fall. He has failed 4 trials by symptoms and had "passed" peaches and sweet potatoes with 12 eos per high power field in January. On May 5 he had another endoscopy with biopsies after trialing pinto beans and grapefruit. To our delight, the results were the best he has ever had...0-1 eos per high power field in all three sections of the esophagus. For a child who at one time has had so many eos that the pathologist could not count them on the biospsy slide, this is truly amazing. Actual remission, even if he is on 60mg of prevacid and flovent each day. What a way for us to prepare for National Eos Week! And Andrew was able to celebrate by adding Lamb to his diet. I wish I could have captured the pure joy on his face while eating that lamb chop so that when he is in the hospital or in pain I could take it out, look at it and remember there will be more days like this.

Please help spread awareness for this frustrating disease so that the children and adults suffering can someday enjoy lives normally once again. People who suffer from eosinophilic disorders can not tolerate food proteins. Many of them that are on elemental diets can only eat dum dum lollipops. Although they are not yet safe for Andrew, he will still be passing them out to spread awareness tomorrow. Won't you join him?

Just a Glimpse

Video by APFED

Join Us For Eosinophil Awareness Week

2011-04-22T11:33:00.001-04:00

May 15 – May 21 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EoE). EoE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EoE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EoE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him/her well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.
At present, even with the rapid increase in prevalence of EGIDs, there is little public funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.
If you would like to learn more or make a donation in Andrew’s name, go to

http//:www.apfed.org/

If you would like to participate in National Eos Awareness Week here are some things you can do (However, if you feel that you can not do any of the following suggestions, just by making one more person aware of Eosinophilic Diseases you are helping our cause):

Sunday, May 15: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 16: Wear hot pink or purple (the color of eosinophils in biopsy slides).

Tuesday, May 17: Hand out dum dum suckers to your friends and coworkers. Many kids with Eos Disorders can not eat anything with food proteins. However, dum dums are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 18: Please send letters to your congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 19: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 20: “Eat like Andrew for a Day Challenge”. Andrew began trialing food in October. He has tried a total of 8 foods. We know he has failed 4 and is now eating 4. He is scheduled to have his next scope on May 4 to see if he is passing the 4 foods he is eating now. The elemental formula is still his main source of nutrition. However, if you would like to try to eat like my Andrew for a day, his foods are sweet potato, lite canned peaches, pinto beans (the ingredients can only be pinto beans, salt and water—I have to make the dried beans) and grapefruit. He can have salt and sugar, but no other seasonings or flavor. You may only drink water, nothing else. Be sure you read every word of every label, and there is no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 21: Take a few moments to let Andrew know, either on here or a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” Challenge went for you.

Thank you for your time.

Ginny and Greg Barton

It's Been Too Long

2011-04-11T17:18:00.000-04:00

I just want to say that I have not forgotten about my blog. The substitute position that was to last 2 weeks in October ended up a full time job for the rest of the year. Between a child with a learning disability, a child with EoE and working full time (which also means working every waking hour after my children go to bed) I literally have had no time for anything else.

I miss writing my posts and hope to get one done over Spring Break, but if not, Summer Vacation begins at the beginning of June. I have a lot of catching up to do! Thanks for your patience!

Inhaled Corticosteroids Linked to Diabetes Risks - What About Our EE Kids?

2011-01-16T21:32:00.003-05:00

There are few treatment options for our EE children. They can either be treated through diet, inhaled or swallowed corticosteroids, or both. In some cases, these inhaled steroids are the only thing that keeps our children in remission. They have tried food elimination or elemental diets, but have failed until the inhaled steroids that our children swallow were added to the mix. Although it doesn't cure them, it may allow them to start trialing foods, or eating foods they were unable to before. Even though we know there may be side effects, they were not supposed to be as harmful as systemic steroids. The lesser of two evils, and we want our children to feel better and heal.

So when I stumbled across the article Inhalers Linked to Higher Odds of Diabetes in Asthma, COPD Patients I was less than enthused. It has long been known that oral systemic corticosteroids such as prednisone can cause diabetes, but this is the first time there has been a link to inhaled steroids, said Samy Suissa, director of the Centre for Clinical Epidemiology at the Lady Davis Institute for Medical Research of the Jewish General Hospital.

In a study of nearly 400,000 people in Quebec, the researchers found that inhaler use was associated with a 34% increase of new diabetes diagnosis and diabetes progression. The study observed that 30,000 of their patients developed diabetes over 5 and 1/2 years of treatment, and patients that already had diabetes experienced a worsening of their disease. Samy Suissa reports their findings in the most recent issue of the American Journal of Preventive Medicine. Based on their results, researchers from McGill University and the Lady Davis Research Institute at Jewish General Hospital in Montreal suggest patients should only be treated when there is a clear benefit. What other choice do our children have? Does the risk outweigh the benefit? It seems that we are running the risk of adding just another diagnosis to our already multiple diagnosed children. But again, I ask, what are the options?

At least in the report Dr. Weiss, who is also a clinical assistant professor at the NYU School of Medicine in New York City suggests that the concern should also be directed at the person's lifestyle, eating habits and other underlying causes of diabetes. He concedes, "Yes, we do know that steroids increase insulin resistance and that people treated with steroids require more aggressive diabetes management. But if we don't generally take an approach that deals with the poor quality of food that people are routinely consuming, the incidence of both these diseases will continue to go up at a dramatic rate."

Does that make me feel better? Not so sure. My wish, as I'm sure is yours, is for one of these doctors/scientists to come up with a cure for our children so they don't have to take all this medication everyday, and they would enjoy a life WITH food and WITHOUT pain.

Biopsy after Food Introduction

2011-01-12T08:28:00.000-05:00

After being an elemental (EO28Splash) only diet for 10 months, Andrew began eating food in late October. As I had mentioned in a previous post, he started with bison, but soon had symptoms, so we eliminated it and began sweet potatoes. He has since been introduced to peaches and broccoli as well. We had to eliminate the broccoli after a week due symptoms. The sweet potatoes and peaches have remained a constant, seemingly causing no symptoms.

He had his first biopsy after the food introduction on January 30. The results, although not positive for EE (>15), were 11 eos per hpf. This is elevated from his pre food introduction biopsy of less than 5 eos per hpf. The scope was done only 2 weeks after stopping broccoli, so our doctor said that CHOP reccommends to stop the last food that caused symptoms, but not take out the other foods. So at this time Andrew will continue with the sweet potato and peaches. He was also allowed to begin another new food yesterday from the "A List" given to us from our doctor. He chose one of his old favorites, grapefruit. It was so wonderful watching his pure joy eating it for "dessert" last night.

That is our plan for the immediate future for Andrew. However, as all of you with children with EE know, nothing with EE is ever uncomplicated. As I had mentioned before, he began symptoms with the broccoli a week after beginning it. One of the symptoms was a constant stomach ache. This stomach ache has continued even though he has been off broccoli for about a month. He has battled problems with constipation in the past and is on Mirolax daily, but when they took an abdominal X-ray at the hospital it was clear. The GI feels that it may be functional stomach pain, but I'm just not convinced. There is never a dull moment with these kids. If anyone has any ideas I would love to hear them.

Well, here's to hoping grapefruit will be a successfull food!

A New Year

2011-01-10T16:33:00.002-05:00

Wow, once again it has been quite a while since my last post. In early October I was asked to sub for two weeks for a teacher that was 14 weeks pregnant. She was put on modified bed rest for the duration of her pregnancy and was unable to return to school. I agreed to continue teaching the class for the remainder of the school year. Although I have been crazy busy and extremely tired, it has also been very rewarding. It has reminded me of the reasons I entered into teaching all those years ago. And, as an added bonus, I get to teach my son content and writing each day (in our school, third graders switch classes)...and he likes it, too!

So, between teaching and taking care of my two children with special needs of their own, my blog has taken a back seat. This saddens me because topics constantly creep into my mind that I know will be perfect for this blog. I am hoping that now that the holidays are over and I am becoming acclimated once again with teaching, things will calm down and I will have some time to devote to some posts once again.

As for today, a bonus day here in the Carolinas, due to the day off because of the snow, I plan to use some of this time to start some posts...and maybe even finish one.

Happy Snow Day....And Happy New Year!

Food Trials

2010-11-20T17:33:00.000-05:00

This has proven to be a complicated process, just as I know it is for most families with EE. Andrew failed his trial with bison based on symptoms. He was having stomach pain, chest pain and increased regurgitation. The GI took him off the bison and had him back on elemental only for about a week before he was able to trial his next food. He noticed a difference in the way he felt almost immediately. We knew we were taking a chance with bison. On the food introduction list that we are following, most meats are in the "C" list category, where as "A" and "B" list foods are less allergenic. However, months ago, Andrew had been told he could eat a meat first, so the doctors wanted to grant him his wish, and he started with one of the least allergenic meats.

After he failed bison, he chose to start over again with sweet potato, a vegetable on the "A" list. He has truly enjoyed eating sweet potatoes, a food that he did not like before the elemental diet. It's amazing what 9 months on EOSplash will do for the taste buds. I mash them with a little of the water I boil them with and slice them very thin and bake them in the oven. He has also had a baked sweet potato. He never complains and will eat them any way they are fixed, but prefers the "french fries" best.

Believe it or not, we had 2 weeks symptom free so we began peaches. I'm not completely sure how they are going. He says that he is fine, but I know that his stomach bothers at times. It is hard to say if it is an "EE" hurt or just from the constant constipation. We just keep trucking along and hoping for the best.

Our doctor recommends scoping after 5 foods, which would be 10 weeks. We are hoping to get a scope done over Christmas Vacation. I never like to get my hopes up. There have been so many times he has been symptom free, but has had 75 or more eos per hpf....even on the elemental only diet. But wouldn't it be a wonderful Christmas present if he was able to eat 5 foods safely and scoped clear for Christmas!!

***I feel as though I need to apologize for not posting in such a long time. I accepted a 2 week substitute position at my children's school (that was 6 weeks ago), and there is no end in sight. Between that and my children I have been extremely busy and seem to have neglected my blog. Although I never had any intentions of accepting long term substitute positions, I am completely enjoying teaching again....it has reminded me why I went into the profession so many years ago.

Eosinophilic Esophagitis is in Remission (FINALLY) on Elemental Diet and Flovent - Now Bring on Food Trials!

2010-10-12T10:50:00.000-04:00

Finally...Andrew is in remission! The scope he had on Thursday September, 29 confirmed it. The elemental diet of EO28 Splash plus swallowed flovent has done the trick. It's taken a while to figure out the right combinitation, but thankfully we have.

Andrew had been anticipating this scope for quite a while. He knew that if it was clear he would be able to begin food trials. As we waited for his procedure to begin he chatted with the nurse about normal 8 year old boy stuff, as at ease as if he was talking to a friend's mom. It still amazes me how unconcerned and comfortable he is while he is at the hospital. I, on the other hand, feel sick to my stomach each time he has a scheduled procedure. Then the conversation turned to food and what food he wants to be able to eat if he has a clear scope - a reminder of the reason we were there, although to Andrew it was still a matter of fact conversation. Although I am glad that he does not get nervous or upset about going to the hospital, there is still something unsettling about knowing that your child has had so many procedures that he is actually comfortable, at ease, and the staff knows him by name.

After the prep time was over and I signed all the papers, basically signing my baby's life away, he was rolled back to the OR where we met the anesthesiologist, the GI and the rest of the team. They answered any questions Andrew, my husband or I had and then they put the mask on his face and he started to fall asleep. I absolutely hate that feeling-watching my baby go under. I gave him one last kiss, told him I love him, and my husband and I went to the waiting room until Andrew was brought into recovery.

About half an hour later a receptionist came for us and brought us to recovery. Andrew was still partially asleep, in that drugged state. Dr. Caicedo walked in shortly after. I could tell by the look on his face that he had good news for us. It was the best looking scope to date. He said there were no visible white spots. The only other time that has happened was when Andrew was in remission on systemic steroids. After he said that, there was this little drugged voice from the bed, "Does that mean I get to have food?!" My heart almost broke. Even though he was still drugged, he knew enough to understand what was being said. Dr. Caicedo was optimistic, as were we, but we had to wait for the biopsy results.

Fast forward 5 days: A nurse calls to let us know that Andrew is definitely in remission, which meant that Andrew could begin his first food trial. I needed to speak with the doctor about the particular food that Andrew wanted to eat (bison) before allowing him begin, which took another 2 days. After waiting so long to eat, I was not going to do anything to jeopardize it by not speaking with the doctor before we began. So a week after the scope we got the green light from the doctor. On Friday we purchased some ground bison and on Saturday, 282 days since the last time he had food, Andrew was able to eat a bison burger.

What a wonderful lunch we had. We were all able to sit down and actually eat food as a family for the first time in over 9 months. Watching Andrew eat his bison burger brought so much joy to our family. He ate it so slowly, savoring each bite. He enjoyed his meal thoroughly. Madison was so happy for him. She grabbed her camera before lunch started and continued to take pictures of him throughout lunch.

When Andrew started his elemental diet he was told it would be for 6 weeks. It has been 282 days. Can you imagine not being able to chew food for 9 months? How would you feel knowing your family is eating meals and you can't each day for 282 days? Watching your friends at school eat lunch, celebrate birthdays with cupcakes, use candy for lessons for 38 weeks and not participating? The list goes on and on. But my Andrew did this with maturity, grace, and so little complaints. I know the challenges have just begun, introducing foods can bring on issues of their own, but I am so grateful that God has given Andrew the strength to deal with curve balls that are thrown his way. I know that as a family we will be able to handle the challenges of food trials if we follow Andrew's lead.

The next step? Andrew will continue eating bison for 2 weeks. If he has no symptoms, he will reintroduce a food every 2 weeks. If symptoms occur we will stop that food and he will be scoped. If no symptoms occur, then he will be scoped after every 5 foods , or every 10 weeks. There is a systematic way to introduce foods based on a scale of the least allergenic foods. It usually starts with vegetables, fruits, and moves on from there. We are deviating some from the protocol by allowing Andrew to start with bison, however, it is on the bottom of allergenic scale for meats. Now it is just wait and see....Wish us luck!

Triennial Meeting - IEP vs 504 Plan

2010-09-26T18:06:00.003-04:00

Thursday we had Madison's Triennial meeting along with her IEP meeting. As much as I know the goal is for the child to place out of special education and no longer need services, at first, I was hoping that my daughter would still qualify. I wanted her to have the option to receive pull out services if she needed them, as well as maintain her current modifications. However, as I began to think about it, I realized that it would be okay if she didn't qualify, because she could still receive a 504 plan for the remainder of her school career....even through college. Many parents do not realize that if their child tests out of receiving special services that they are still eligible for a 504 plan, allowing them to continue to receive their accommodations. As stated in the article "A Parent's Guide to Section 504 in Public Schools"

Section 504 states that: “No otherwise qualified individual with a disability in the United States, as defined in section 706(8) of this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving Federal financial assistance...”

Because a person with a disability is anyone who: " (i) has a mental or physical impairment that substantially limits one or more major life activity; (ii) has a record of such an impairment; or (iii) is regarded as having such an impairment” a child that "tests out" of services, but would still benefit from accommodations can and should receive a 504 if they no longer qualify for an IEP. As well as including specific learning disabilities, a child may also receive a 504 for medical conditions such as diabetes, epilepsy, allergies and for my EOS followers, it would include eosinophilic esophagitis as well. If one of these issues are impeding your child's ability to perform in school, they should qualify for a 504. The purpose of this plan is to level the playing field for our children. What sense does it make to phase a child out of their IEP and give them no support afterward? It is in your child's best interest to know which accommodations will benefit them while they work toward a complete phase out.

As for Madison, it didn't end up making a difference. After struggling with the decision to have her privately tested again or letting the school do it, and then thinking about what to do if she didn't qualify, she did...in reading, writing and math. However, her resource teacher was shocked about the math, saying that she knows Madison knows how to do the problems. It was visually confusing, but she also could have just had an off day. Her IEP team is wonderful including the resource teacher, a new school psychologist (who wrote up the most comprehensive eval I have seen from a school psychologist), the classroom teacher and principal. We reviewed her test results and rewrote her IEP making it more effective for her needs now. It was a very productive meeting.

So, I know I said in the beginning that I wanted her to still qualify, and I did/do, so that she can receive the services that she needs, but as a parent, there is still that feeling you get in your stomach and heart when you hear the news. I want what is best for my child, and I will never stop fighting to attain that, but truth be told, there are so many times I just wish that she didn't have a learning disability and could complete all her work as easily and quickly as most of her peers. However, I am so blessed that she is my daughter. She is such a hard worker, so smart, kind, loving and beautiful. I'm so proud of her!

Back to School

2010-08-24T15:41:00.000-04:00

Wow, it's hard to believe that the children will be going back to school tomorrow. The summer has flown by as it always does, leaving me feeling rushed as the last day of vacation has arrived. Although we always look forward to the "lazy" days of summer vacation, somehow, they are always filled with appointments and activities that somehow leave us little time for that "laziness" that I crave in June.

This week has been filled with last minute shopping, Back-to-School Night to meet the teachers and my personal meetings with my children's teachers to discuss their various special needs. Of course Madison loves the shopping part, whereas Andrew would rather be home doing anything else. They both enjoyed meeting their teachers, discovering the other students who will be in their class and exploring their new classrooms. And then there are the first teacher conferences that I set up before school starts each year.

Because both of my children have special needs, I feel it is important to schedule a meeting with their new teachers before they ever step foot into their new classroom. For Madison, this gives me an opportunity to go review her IEP with her new teacher so that she will be familiar with the accommodations that Madison is supposed to receive during the year. This year when I contacted Madison's teacher, I asked to meet with her, stating that I knew she would be changing classes for subjects. Her email reply asked if I would like to meet with the entire 5th grade team, as Madison would probably be working with each of them at one time or another. That immediately gave me positive feelings about the year. The meeting went well. The entire team listened to me discuss Madison's background, her strengths and weaknesses. They also asked questions and gave suggestions as to how they could make modifications in the classroom to better accommodate her. It was a truly productive and positive meeting. I am a true believer that when the student, teachers and parents work together, the education process works at its best.

Andrew's meeting was less involved, but yet just as important. I needed to explain to his teacher what eosinophilic esophagitis is and what impact it has on Andrew. She needs to be aware that he is on an elemental diet and will need to drink his "juice boxes" at various times during the day. Andrew also asks that I go into his class the first day of school and help him explain to the class why he can only drink. So I needed to set up a time with the teacher for me to do this. The meeting went well and I will meet with the class tomorrow.

Here's to a great year! First conference....done!

Elemental (Amino Acid-Based) Formula Coverage

2010-07-26T13:30:00.003-04:00

For some children with Eosinophilic Disorders, an amino acid-based elemental formula is a large part, if not the only form of nutrition that enters their body each day. Due to allergies and reactions to so many foods, they are unable to consume a regular diet of everyday foods. These formulas are life-sustaining to these children. Without them they are sick each day, some to the point of vomiting constantly or having recurrent diarrhea.

With this in mind, one would think that the insurance world would see it as a necessary medical need, therefor providing coverage for this extremely expensive and unpalatable medical food. In most states, this is not the case. There are only 14 states that provide coverage for elemental formulas at this time, and some of those with minimal coverage at best. Here is that list with links to their coverage:

Even if your insurance company is based in one of these states and provides coverage for formula, it may however, not see Eosinophilic Disorders as one of the covered illnesses under the policy. It may also only provide partial coverage if the child consumes the formula orally, whereas if the child is tube fed, it would be covered at 100%. These situations are so frustrating when all we want as parents is to see our children get well and stop feeling sick. Fighting insurance companies takes up time and energy that we would rather be using to comfort our child, but with the cost of the formula, it is important to know what the options are, or at least where to begin.

Believe me, I know there is much more information out there than I am going to share here, but this is just what I have found, and some of what we used during our own appeal process for Andrew's formula coverage. Although we live in North Carolina (a state that does not have formula legislation), our insurance is based out of Rhode Island. EE is not a covered illness for formula under our insurance plan, which led us to file an appeal. Rhode Island's coverage for formula is $2,500 per year. Andrew has been on an elemental only diet since January 2. He averages about 8 to 9 E028 Splash juice boxes a day. That is approximately 255 per month. One case contains 27 boxes and is $115. That is about $1100 a month. Occasionally there are coupons, but never the less, we had used the insurance money within the first 2 months. But can we just stop feeding our son what makes him feel healthy because insurance no longer covers it? Do we put him on a feeding tube because our insurance company is willing to pay for a very expensive surgery with possible complications and then they will pay for formula coverage? So fighting the insurance companies is what we have to work with.

Finding out what your state allows is a start. Check out the links above if your insurance is in one of those states. If it allows coverage, see if EGID's if a covered benefit, if not file anyway, but you will probably have to file an appeal. If your state does not have coverage, you do not have insurance or you need to write an appeal, here are some things you can look into:

WIC - The Women, Infants and Children Nutrition Program (WIC) is a government program designed to assist families with nutritional needs. Neocate and Elecare, formula providers, are usually reimbursed by most state WIC programs when ordered by a physician and medical necessity is evident. You would need to contact your health department to see if you qualify.

Medicaid - Medicaid is a combination state and Federal government run program. Each state has its own guidelines as to coverage of medical food. Again, contact your health department to see if you would be eligible for Neocate or Elecare through Medicaid.

Sample Insurance Letters - The Neocate website has sample insurance letters for each of their products.

Neocate Infant DHA and ARA
Neocate Infant
Neocate One+
Necoate Junior
Neocate Junior plus prebiotics
Neocate Nutra
E028 Splash
Pepdite Junior
Letter of medical necessity for Elecare products

Patient Assistance Foundation - The Abbott Nutrition Patient Assistance Foundation may be able to help assist with formula costs if you don't have the funds. Visit The Partnership for Prescription Assistance website for downloadable applications. You can call The Partnership toll-free at (800) 222-6885 (Option 5).

APFED - Tips for Obtaining Formula Coverage and Formula Usage and Coverage in EGID (Click on Advocacy tab, then scroll down until you see Formula Coverage)

Children's Magic - (Children's Milk Allergy and Gastrointestinal Coalition (MAGIC)) -

"Children’s Milk Allergy and Gastrointestinal Coalition (MAGIC) is committed to promoting healthcare coverage and reimbursement of elemental formulas for children who are unable to consume a natural, life-sustaining diet due to various allergies or diseases. " This website gives more information on how to obtain coverage, as well as how to begin legislation in your state if coverage is not already provided.

Website resources:

Formula coverage is worth fighting for. Our children's health and happiness are definitely worth the fight. My wish is that some day there is a cure for this horrible disease, but until that day, my wish is that insurance companies do the right thing and provide coverage for the life sustaining food that these children need. We pay our premiums, they should do their part... it is only a drop in the bucket for them, but life altering for our children.

Individualized Education Program (IEP) and Tips for Parents

2010-07-19T11:18:00.002-04:00

With August quickly approaching, so is the beginning of school...at least for those of us that live in the south. The start of school also means IEP meetings for many of us with children with special needs. Below I have given an overview on Individualized Education Programs (IEP), as well as listing resources to help parents prepare for an IEP meeting, whether it be your first or your fifteenth. Hope you find this post useful.

An Individualized Education Program is mandated by the Individuals with Disabilities Acts (IDEA). The IDEA requires the public schools to develop an IEP for every child that has met the requirements to be considered in need of special education or related services.

In order for an IEP to be successful, parents, teachers, other school staff, and even sometimes the student must work together to identify the student's needs and the best way to address them. So if your child has been identified with a learning disability and is eligible for services, the next step is to set up an IEP meeting.

The parent will receive a notice inviting them to the meeting. The student's classroom teacher, special education teacher and a Local Education Agency (LEA) representative will be there. The parent also has the right to bring one other person that knows his child well, an advocate, tutor, child psychologist, attorney, etc.

An IEP must be reviewed and updated annually, however, the parent, or another member of the IEP team may call a meeting at any time if they feel progress or goals need to be reviewed. Every three years a student's eligibility needs to be reassessed to see if the student will continue in the program.

During an IEP meeting, the team will determine goals and objectives appropriate specifically to the individual child. The school will already have a draft, but the parent needs to remember that it is a work in progress and that they may ask to add or change anything they feel does not apply to their child. In North Carolina, an IEP specifies:

*the services the student will receive (e.g., counseling in the guidance office for thirty minutes once a week)
*modifications the student requires for classes or testing (e.g., preferential seating, a word processor, or testing in a separate room)
*whether the student needs alternate assessments (e.g., assessment by portfolio)
*which regular education classes the student will take
*how much of each school day the student will spend with non-disabled peers

Okay, so those are some of the logistics, but what about some tips. As a former teacher that had been on the other side of IEP meetings, I had an idea of what to expect. But I also know how intimidating it can be to walk into one of those meetings, especially if you have no idea how to begin preparing. So here are some resources that will help you prepare for your first or your fifteenth IEP meeting. Hope they help!

Websites:
Getting Ready for the IEP Meeting
How to Write IEP Goals
The IEP: Everything You Need to Write an IEP
Contents of an IEP
Developing Your Child's IEP
IEP Checklist
A Student's Guide to the IEP
Your Child's IEP: Practical and Legal Guidance for Parents

Books:
The Complete IEP Guide: How to Advocate for Your Special Ed Child

Thanks To the National Institutes of Health (CoFAR) and Voters for EGIDs at Chase Community Giving

2010-07-17T09:39:00.005-04:00

During National Eosinophil Awareness Week it was stated that the National Intstitutes of Health (NIH) gave $0 a year in funding toward Eosinophil research. I am happy to say, that is no longer the case. In a press release on Wednesday, July 14, NIH Expands Food Allergy Research Program Consortium of Food Allergy Research Renewed With a Five-Year, $29.9 Million Grant, NIH announced the Consortium of Food Allergy Research (CoFAR) will be funded for 5 more years. CoFAR has been working on ways to treat and prevent food allergies since 2005. It will now broaden it's scope to include genetic causes of food allergy and studies of food allergy associated with EGIDs, mostly EE (EoE).

While food allergies are associated with the production of immunoglobulin E (IgE) antibodies as a response to a food which may lead to symptoms anywhere from hives to anaphylaxis, EGIDs can also be associated with IgE, but are also associated with stomach pain, vomiting, chest pain, and trouble swallowing. There is also inflammation, irritation and a large number of eosinophils in the esophagus.

“Key research on eosinophils has confirmed the important role they play in inflammatory diseases of the upper GI tract,” says Griffin P. Rodgers, M.D., director of NIDDK, co-sponsor of CoFAR. “We hope that the new genetic studies involving EGIDs will help researchers identify and develop novel treatments.”

CoFAR is currently conducting clinical trials with food allergies. One is with drops containing a gradually increasing amount of peanut protein that is placed under the patients tongue, the next is a gradually increasing peanut protein that is given in suppository form and the last is a gradually increasing amount of egg protein given by mouth.

“We are pleased to continue our support of CoFAR, NIAID’s major program dedicated to exploring the causes of food allergy and developing new treatment and prevention strategies,” says Daniel Rotrosen, M.D., director of the Division of Allergy, Immunology and Transplantation at NIAID. “By expanding CoFAR’s research goals to include studies of the genetic components of food allergy, and broadening the research to include food allergy-associated diseases like EoE, we expect that its work will continue to increase our understanding of how food elicits an allergic reaction in certain people.”

The EGID studies will be taking place at Cincinnati Children’s Medical Center Hospital, University of Colorado Denver and Children’s Hospital of Philadelphia.

This is truly exciting news in the world of EGIDs!! Hopefully this will be a step toward having a treatment that will allow our children to eat again and not have to go through such invasive testing just to see what foods are "safe" for them. Thank you NIH and CoFAR!

Other great news for EGIDs this week...APFED, CURED and Kids with Food Allergies all came in the top 200 for the Chase Community Giving Charity fundraising competition, winning EACH of the charities $20,000. Thank you to everyone that voted!

No I CAN'T -- Yes, You CAN - Building Your Learning Disabled Child's Self Esteem

2010-06-29T17:21:00.009-04:00

Reading has always been a struggle for Madison. It has taken a long time, has been challenging to figure out words, and she just plain has not liked it. This is all related to her Visual Processing Disorder. In order to help her with this she has endured Vision Therapy for 2 years--the problem is, she does not recognize the progress she has made. She has programmed herself to believe that reading is difficult, and will be difficult, regardless of the gains she has made over the past couple of years. So the question is, how do we reprogram our children to believe that they CAN do something that has been forever difficult and challenging to them? How do we encourage them to take the risk to forge ahead? How do we get them to ignore that "bully" in their mind telling them "this has always been difficult, therefor I still can't do it and I don't want to try...I'm just going to fail".

Children with learning disabilities often have low self esteem, self doubt, and experience frustration and failure. Some tend to believe that they are not in control of their own successes--that luck or fate is the reason for the outcome, not their own hard work. Or they believe that because it has always been difficult, it will always be difficult, even if testing has shown they have made tremendous growth. There are many things we can do as parents to help foster self esteem in our children. Following are some suggestions from the article Building Self Esteem with LD Children:

Be empathetic. See the world through your children's eyes.
Communicate with respect. Don't interrupt or put them down; answer their questions.
Give undivided attention. Children feel loved when we spend one-on-one time with them.
Accept and love children for who they are. This will allow them to feel more secure in reaching out to others and learning how to solve problems.
Give children a chance to contribute. This communicates your faith in their abilities and gives them a sense of responsibility.
Treat mistakes as learning experiences. Children whose parents overreact to mistakes tend to avoid taking risks, then end up blaming others for their problems.
Emphasize their strengths. A sense of accomplishment and pride give children the confidence to persevere when they face challenges.
Let them solve problems and make decisions. Avoid telling children what to do; encourage them to come up with solutions to problems.
Discipline to teach. Do not discipline in a way that intimidates or humiliates your child.

However, there are times, even when you have practiced these suggestions since your child's first breath, that their confidence in themselves still falters, even when they have overcome some of their challenges and now have skills to perform tasks that were previously more difficult. For example, as I mentioned before, reading has always been difficult for my daughter, however, through vision therapy, tutoring, and long hours of help from home (I am a former elementary school teacher) she has made tremendous progress, but still looks at books that she is more than capable of reading and truly feels that it will be too difficult. She refuses to even give them a chance. That little voice in her head, that "bully", is telling her, "I know this is hard, I CAN'T do this." No one can convince her that she can except herself. She has to reprogram her brain. There are steps that we can take to help her do this, which we have begun. Here are some ideas:

Have your child "talk back" to the "bully" voice in their mind, telling it "STOP, yes I can do this!"
Have your child remember a time in the past they thought they couldn't do something, but when they tried, they were successful.
When your child gets worked up, have them take a step away from the situation, clear their mind, then return to it a few minutes later.
Have your child recall an activity that they do well, but had to work hard to achieve. Relate this to the challenge at hand.

Each child is different and requires different methods of encouragement or intervention. A parent (and/or teacher) needs to find what works best for the individual child. What's important is that we listen to our children and help them build their self esteem and realize their full capabilities.

Andrew Update: Biopsy and Ph Probe Results

2010-06-10T09:21:00.005-04:00

We received Andrew's results from his endoscopy/biopsy and ph probe a couple of weeks ago, but things have been crazy so I haven't had a chance to post the results. Let me start by giving a brief review of his treatment history to this point. When he was diagnosed at age 3 he was put on a high dose of systemic steroids which did not help. Over the next few years he was on and off swallowed steroids with no success as well. At that time we changed GI's and he had him patch tested. He started an elimination diet of 5 foods and his Eos count went up. He was then patch tested again at a different clinic, was taken off 13 foods, and again his Eos count went up. At that point we put him on an elemental only diet (Neocate Splash) for 8 weeks. When he was scoped after those 8 weeks there were so many eos phf they couldn't count them. So then we decided to try a round of high dose steroids while he was also on the elemental diet. So now for the results....

The endoscopy showed that there is still furrowing and irritation, but no visible "white patches". The biopsy results showed that he is in histologic remission (5 eos/phf, the first time he has ever been in remission). The Ph probe showed that he has excessive reflux which is all acidic, apparently the cause of irritation in the esophagus. So what about the treatment? Our doctor explained to us the importance of getting Andrew's reflux under control first. So he will be going from 20 mg of prilosec 1x/day to 40mg 2x/day. Pretty big jump. Next we need to taper him off the high dose steroids. This process takes 4 weeks. After he is weaned off the steroids, we will see if he can maintain remission off the steroids, but still on the elemental only diet for at least 3 weeks. The doctor that our GI is consulting with suggests that we have Andrew scoped again after this period to see if he has maintained remission. Our GI feels that we could go on symptoms, and if he doesn't have any symptoms after the 3 weeks, we could then begin to trial a food. So that is the treatment plan.

Our dilemma: To scope or not to scope. Each time Andrew is scoped there is risk involved. Anesthesia poses a risk, not to mention the process of an endoscopy itself. Each time I watch my child go to sleep my heart drops to my stomach and I say a little prayer for my son and the doctors. Each morning of his procedures my stomach is upset. I hate (even though that's a word I tell my kids not to use), but yes, I hate for Andrew to have to have procedures of any kind. I don't want him to have a scope if he doesn't need to. I respect our GI for not wanting to put Andrew through any unnecessary medical procedures. He is not thinking about his pocketbook, but of my child. However, with that said, what happens if we don't scope him. When he was on formula alone he was basically symptom free, but still had excessive eos. What if he is symptom free and we don't scope him and start food trials and he fails his food trials. Will we really know if it is the food or if he really stayed in remission after he was tapered off the steroids? So as much as I hate to have him scoped, I'm thinking it may be the best thing to do to be sure we have all of the answers before we start food trials. Why can't anything with this disease be easy? I just have to remind myself each day that I am so lucky that Andrew is my child and that he is so wonderful when it comes to his EE. How many 8 year old children would drink this awful stuff for 6 months and never complain? What a blessing he is!

I would love your input and thoughts about scoping, please feel free to leave a comment.

Learning Disabilities and End of Grade Standardized Testing

2010-05-25T12:28:00.009-04:00

I always dread the end of the school year. There is so much pressure put on students regarding end of grade standardized testing. The teachers have pressure put on them for their students to perform well, so many of them in turn put pressure on the students. This can cause even the best of students stress and anxiety. So what about the children with learning disabilities? Research has shown that these students experience more stress and anxiety on tests than their non learning disabled peers. So imagine having to cope with your disability as well as an added amount of stress.

I personally don't agree that all children's competence or knowledge can be assessed by the format of standardized tests. As we have hopefully become more aware over the past several years, children learn differently and need to be afforded differentiation in instructional and evaluative strategies. Not all children learn through pencil and paper question and answer (especially the LD child), which is the format of the standardized tests. This being said, standardized end of grade tests are the reality and we need to know how to prepare our children best for them.

If your child has been diagnosed with a learning disability, the best way to be sure that they succeed to the best of their ability in school and on standardized tests is to meet with the school and set up an Individual Education Program (IEP). Not only will the IEP list goals and objectives appropriate for your child, it can also allow him modifications for the classroom and accommodations for classroom and standardized tests. Examples of accommodations for testing could be having items read to child, extended time, multiple test sessions, child marks in book, large print, or having a scribe for written answers. These are only a few, and they vary
depending on the disability.

As stated in an article on Learningdisabilities.about.com, Testing Accommodations - What are Testing Accommodations?, there can be benefits, as well as some pitfalls, to accommodations. If the accommodations are done properly, I personally feel they far outweigh the pitfalls. The parent and the school team members need to be sure to only use accommodations that directly relate to the child's disability. When this is done, I feel that it gives the LD student the self confidence and opportunity to meet the child's full potential on standardized tests. It is stated in the article that the overuse of accommodations may lead to over inflation of scores and that this may lead teachers to overestimate the child's skills. Is it wrong to think that a standardized test should not be the only tool that the school should use to monitor the LD child's (or any child for that matter) progress? Shouldn't their progress and skill level be evaluated on the culmination of their work throughout the year?

No matter how the teacher evaluates the child, end of grade standardized tests have become an important part of our children's academic school year. Therefor, it is up to us as parents to do whatever we can to help our children succeed to the best of their ability. Making sure that their anxiety level is as low as possible and all of the appropriate testing accommodations are in place are a great start in ensuring their success.

*On a personal note-For the first two years my daughter has had end of grade standardized tests we have had her participate in an online program called Study Island. Some school systems provide it, but if it doesn't, the program can be purchased independently. If you purchase it independently, as for North Carolina, it is $59 per grade level. The program simulates end of grade test questions by subject based on each state's Standard Course of Study. The program is purchased according to the state the student lives in. As well as asking questions pertaining to the Standard Course of Study, Study Island also gets the student acclimated with the testing process and format. Let me state that I am not associated with Study Island in any way.

In the Hospital: National Eosinophil Awareness Week - Days 5 and 6

2010-05-21T09:46:00.003-04:00

Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital. It is a scheduled visit. Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry. Six of those 8 endoscopies have been done in the last year and a half. That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life.

As I sit here and watch him play the hospital video games with the probe in his nose, he seems so content. I know, that seems odd, doesn't it? I am so lucky, because my son is really such a trooper. I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for. He is such a brave, strong kid. He rarely complains, even though he has not had a single bite of food since January 2 of this year. He drinks eight of his Neocate Splash juice boxes each day and never complains. Even while on those, he regurgitates after drinking them more than I realized. With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count. But still, he never complains. He wakes up from a scope and is happy. He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain. His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep. Some children may not be so calm and cooperative.

So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient. He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage. I learn so much from him. Andrew, you and Madison are my heroes, and I love you dearly!

Thank you

2010-05-19T08:48:00.001-04:00

Wow! The week is only half way through and yet, I am already so touched by all of the support our family has gotten for National Eosinophil Awareness Week. I have family and friends, old and new, that are participating in the activities that I have listed on this blog and Facebook. My niece went out and bought a pink shirt just so she could write "I am wearing this shirt to raise awareness for eosinophilic esophagitis disease" on the front and then "for my little cousin Andrew" on the back." She, as well as other friends, have passed out dum-dums. Friends and family have posted information on Facebook each day. We even had a former preschool teacher contact us to write an article about Andrew to help spread awareness. People are good. It is amazing how people can come together for a common cause if you just ask. We are so blessed to have so many wonderful people in our lives.

So thank you to everyone that is helping us spread the word this week. It has touched my heart and means more to me than you can know. Andrew is so lucky to have so many people who care about him.

Eos Awareness Week: Day 3

2010-05-18T07:38:00.005-04:00

Did you know that all of the funding for Eosinophilic Disorder Research comes from private providers. The National Institute of Health currently provides $0 in funding for research for these diseases that are rapidly on the rise.

Today is the day to PARTICIPATE in Eos Awareness Week. A few suggestions given by apfed.org are:
*VIRTUAL WALK – Encourage those in your community to participate in APFED’s

National Eosinophil Awareness Virtual Walk. Get together some friends or your local
support group, Register online, collect pledges, and then meet at local park for a
“Walk” and social event.
*SIGN UP: Take the day to commit to participating in an APFED event, like

attending the conference this summer. Get registered at: APFED 2010 Conference
*ATTEND A LOCAL APFED EVENT: Check the Fundraising Page of the APFED

website to see what events are planned in your area and show your support by
attending. The list will be updated as events come in.
*WEAR YOUR APFED SHIRT: A simple way to participate is by wearing your

APFED t-shirt. If you don’t have one, you can purchase one by visiting the APFED
Store.

National Eosinophil Awareness Week - Day 2

2010-05-17T08:35:00.004-04:00

As I had mentioned previously, this week, May 16 through May 22 is National Eosinophil Awareness Week. I am going to try to share different videos, stories or activities throughout the week in celebration of this week.

My first entry is an article that I wrote for CNN ireports:

Life Without Food: National Eosinophil Awareness Week - May 16 through May 22

May 16 – May 22 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EE). EE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating as well. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.

At present, even with the rapid increase in prevalence of EGIDs, the National Institute of Health (NIH) allocates $0 in funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.

Help us celebrate National Eosinophil Awareness Week by spreading the word and visit apfed.org to learn more about Eosinophilic Disorders or to make a donation.

Special Needs Awareness - Follow Up

2010-05-11T11:05:00.002-04:00

A few weeks ago I posted an entry on special needs awareness. My Parents of Special Needs Children support group at church had been asked to do a presentation at the PW (Presbyterian Women) Luncheon on children with special needs. As we prepared for this presentation, we decided that each of us would give personal quotes that would be displayed on tent cards at the tables explaining our thoughts or a specific situation we have experienced raising our children. As well as that, two of our members would speak. The first is a retired special education teacher that gave a brief overview of the vast special needs and disabilities that exist. She emphasized that only 20% of disabilities are visible. The rest of these children look just like any other child. The second member to speak, Eileen Koehler, is the mother of 3, her oldest having Asperger's Syndrome. I was so touched by Eileen's speech, I asked her if I could share it on my blog. She was kind enough to agree.

Eileen's Speech

Hello, my name is Eileen Koehler. I have been a member of DCPC for a little over a year. I have three boys, Thomas 12, Henry 9 and Owen 7. I have heard many wonderful things about the staff of the DCPC preschool and have witnessed many acts of love and compassion that all the volunteers and so many members give to all the children. DCPC members give so much of their time and talent for our children and I am so very grateful.

I have been asked to speak a little about the special needs children here at DCPC. All the diagnoses that you see on the poster boards were given to children who are members of this church. The quotes are directly from members and express what they have experienced either within the church community or outside. I realize that these diagnoses might seem trendy or new fangled. But let me suggest that we consider all the scientific advancements made in medicine; and how we readily applaud the increased chances of survival for certain types of cancer or the improvements in the treatment of diabetes, and so on. So, logic dictates that we should also applaud the advancements made in neuroscience that can offer better explanations for many child behaviors that were not known before.

Since “special needs” represents many different challenges; from cognitive to medical difficulties, I asked a mother if there was one thought that I could convey to you that would encompass what our families wish and it is this…that because we are human sometimes it is easier to look approvingly at the well behaved, self possessed child and otherwise be judgmental of the child (or the parent for that matter) that is pulling away from their parents’ touch, not responding to their name or seemingly refusing to follow instructions, avoiding eye contact, unusually reserved bordering on rudeness, bumping up in line, or a little moody because they know they cannot fully enjoy a church event due to medical issues. Whether it is genetics or the circumstances surrounding their birth, it is at that very moment when we are challenged to remember they were created by God exactly as they are and they face adversities that, in many cases, are unseen to the naked eye. I don’t know if Jesus had special needs children in mind when he said in Matthew, Chapter 18-5, “If anyone takes in a child like this for my sake, he takes in me”. But, maybe they are God’s little messengers to remind us that when it is hardest to love, that is when love is needed the most. It could be God’s way of asking us to meet that challenge and so these children are a gift from Him to bring out the best in ourselves. I remember when a physician very bluntly said that more was going to be expected of us as parents. More patience, different parenting methods, better understanding of child development, more informed about alternative educational techniques. I felt so angry….I think of myself as average and I didn’t want the expectation of being some bottomless pit of patience and a possessor of tremendous insight into child behavior. I was prepared to be a slightly improved, lovingly well-intentioned, but flawed parent much like my own mother! Even siblings of special needs children sometimes have difficulties because so much attention is given to one member of the family. They cannot articulate what they feel so they may act out in public. There is a story for all this, we landed in Holland.

If you had the chance to read Emily Pearl Kingsley’s “Welcome to Holland”, it expresses very well what our lives feel like. When you realize your child is different or when you officially receive a diagnosis, Kingsley likens the experience to having your vacation plans drastically changed from a wonderful trip to Italy to unexpectedly landing in Holland…permanently, forever. The portion that resonates with me in relation to religious faith is “But everyone you know is busy coming and going from Italy and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned. The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss.”

That is from the viewpoint of a parent; my feelings of loss…a bunch of teenage boys coming over to the house to hang out with Thomas. All the parents here of special needs children can tell you something about their lost dream. And make no mistake, as those quotes show; we have some painful stories to share. But we also are adults and have our faith and each other to help sustain us. We need and appreciate any support we receive from all of you. However, that passage also can represent the feelings of the child who is, or will someday be, cognizant of their separateness from their peers. What about their lost dreams of party invitations, play dates, having their name called in a friendly way to join a game, having a girlfriend or boyfriend, meeting up with a bunch of kids after a movie and eating in the mall food court…but can’t because they need a special diet. They spend a lot of time at doctor offices and therapy sessions. They too can see the disapproving looks when they “don’t fit your idea of normal”. For them, like landing in Holland “that pain will never, ever go away”.

So I think to myself, maybe it is not about what I need but what our children need from DCPC, they need you. As parents we can give them all the love we have but we won’t always be there during some of the most challenging moments of their lives whether in the classroom, on the school bus, on the playground and further on in their lives when they are in college and in the workplace. It is now, in their youth, their experiences here with you at DCPC that the development and growth of their faith in Jesus’ love, as His love is expressed through your kindness, that is going to be so very crucial for their future. Because it is this very faith they are going to need when they try to find their way in a society that can lack inclusivity and even be outright unkind. They are going to need strong religious faith to sustain them when they witness all the wonderful experiences other children continue to have in Italy; the times when they feel alone and rejected, when they are tired and faced with numerous medical procedures, when they feel set apart because they need special classes to help them keep up with their peers socially or academically. So besides their own families, where else will they experience the welcoming and unconditional love of Jesus, if not here at DCPC…from all of you? We know that they can find sanctuary here and can truly believe in the love of Jesus Christ through each of you and your family’s patience, your smile, and your kind words of encouragement.

I would like to conclude with something from Matthew, Chapter 18- 10, “Do not think badly of these little children. I tell you this. They have angels in heaven. And all the time their angels can see the face of my father who is in heaven.”

Thank you Eileen for sharing this with us. It truly gives an insight into the feelings and thoughts of us as parents of children with special needs.

Eos Awareness Week May 16 - May 22

2010-05-04T15:45:00.005-04:00

Our son, Andrew suffers from an Eosinophilic Gastrointestinal Disorder. May 16-22 is National Eosinophilic Awareness Week, and we would like for you to join us in raising awareness.

Take a minute and imagine a life without food. Think about a life with no pancakes, no cheeseburgers, no birthday cake, no cookies, no morning coffee, or no sweet tea, nothing to chew on for breakfast, lunch, or dinner. Your nourishment comes from an elemental formula (which tastes like it sounds) made up of amino acids and no food proteins. Can you imagine how a holiday meal would be? Could you imagine a life without food? What if one of the things (food) that is supposed to sustain your life makes you severely ill?

That is how many children with Eosinophilic Disorders live every day - without food.

May 16 through May 22 is National Eosinophilic Awareness Week. Eosinophilic Disorders are somewhat rare white blood cell disorders where the body misinterprets food as if it were a parasite and sends eosinophils, a type of white blood cell, to attack parts of the body.

Our son, Andrew suffers from Eosinophilic Esophagitis, the most common of these rare diseases. When he eats certain foods or is exposed to environmental allergens, his body sends eosinophils to his esophagus where they attack and damage the tissue. This disease causes chronic chest and tummy pain, vomiting, gagging, and other symptoms for him. There is no cure for eosinophilic disorders and no good treatment. The current treatments are steroids and/or the elimination of foods (in his case all foods) from the patient’s diet. Andrew is currently on an elemental only diet. He gets all of his nourishment from elemental
formula. He has not had a scope free of eosinophils or damage to the esophagus, therefor he has not
been able to add back, or trial, any foods. Very few doctors are even aware of the disease or how to
manage it. Andrew regularly goes to Levine Children's Hospital for endoscopies with biopsies, tests, and
doctor appointments.

At this time, the National Institutes of Health designates $0 in annual funding for research for Eos Disorders. Fortunately, some Congressmen have stepped forward and are trying to help change that. However, we need much more congressional support to fund the research that is needed to advance the management of the disease and ultimately find a cure.

You can learn more about Andrew's story and EE at my blog

eeldkids.blogspot.com

If you would like to learn more or make a donation for research in Andrew's
name, go to:

http://www.apfed.org/

If you would like to participate in National Eos Awareness Week, here are some things you can do:

Sunday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Monday, May 17: Wear hot pink or purple (the color of eosinophils in biopsy slides)

Tuesday, May 18: Hand out dum dum suckers to your friends and coworkers. Many kids who have Eos disorders cannot eat anything with food proteins. However, dum dum suckers are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Wednesday, May 19: Please send emails to your Congressmen reminding them that this is National Eos Awareness Week.

Thursday, May 20: Contact me if you would like to sample the elemental formula that Andrew has to drink each day.

Friday, May 21: “Eat like Andrew for a Day Challenge”. Even though Andrew can only have elemental formula, for today, we will pretend he has a few safe foods. Following is an example of a diet for a child with Eosinophilic Esophagitis, so on this day, do not eat anything but grapes, potatoes, pears, pork, rice, and carrots. Do not drink anything other than regular koolaid or water. Make sure you read every word of all labels, and there’s no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.

Saturday, May 22: Take a few minutes to let Andrew know, through a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” challenge went for you.

Thank you for your time,
Ginny and Greg Barton

Learning Disabilities and Anxiety

2010-04-23T12:19:00.004-04:00

Anxiety, as defined by Mr. Webster, is an abnormal and overwhelming sense of apprehension and fear often marked by physiological signs (as sweating, tension and increased pulse), by doubt concerning the reality and nature of the threat, and by self-doubt of one's capacity to cope with it.   Okay, for purposes of this post, let's simplify the definition to extreme or excessive worry that interferes with a child's ability to enjoy life or to perform some normal, everyday activities. Did you know that research shows that children with Learning Disabilities most likely experience higher levels of anxiety than non LD kids? Makes sense, right?

According to the article Anxiety Among Kids with LD: Three Clinical Psychologists Discuss Causes and Symptoms the research they have collected indicates that first signs of anxiety present themselves when these children enter kindergarten. One of the psychologists, Roberta Goldberg, terms it "the anxiety of not being able to keep up." The article also goes on to say that at this age most parents are not aware there is a learning disability and just feel the child isn't working hard enough. This of course adds to the child's anxiety, who already feels as if he/she can't do something they should be able to do. Most children are not identified LD until 2nd or 3rd grade or later (that is of course if they are identified at all : 30-50% of the population has undiagnosed learning disabilities.(Source - National Institute for Literacy)). Also, 44% of parents who noticed their child exhibiting signs of difficulty with learning waited a year or more before acknowledging their child might have a serious problem (Source: Roper Starch Poll - Measuring Progress in a Public and Parental Understanding of Learning Disabilities). The article Anxiety Among Kids with LD tells us that before and during the identification time period, their anxiety levels can be high.  According to these psychologists, the anxiety for the LD children is the highest in elementary school, then subsides some in junior high, and subsides even more in high school.

Anxiety in our children can manifest in many different ways.  Some symptoms can include, but are not limited to nightmares, separation anxiety, stomach pain, headaches, irritability, crying, and excessive worrying. It is our responsibility as parents to pick up on these symptoms and to act on them if we feel they are outside the realm of normal for our child. Many LD children experience bullying, fear of failure, fear of school and low self esteem, just to name a few. These can all lead to anxiety, which without support can become overwhelming for our children.

Interestingly, there is a link between anxiety and problem solving in children, and especially those with learning disabilities...not like it isn't already tough enough for our kids. In the article Anxiety and Problem Solving in Kids with LD it states

Recent discoveries from the world of neuroscience indicate that stress can cause an increase in certain stress hormones, particularly one called cortisol. Scientists know that stress can cause problems with memory and problem solving. High levels of cortisol in the blood in the brain make it difficult for cells in certain regions of the brain to absorb glucose, which is the major source of nutrition for the brain. The hippocampus is the area of the brain that has a lot to do with memory, and the cortisol is actually drawn to this region, where it can have a negative impact on memory and learning.

A child with a learning disability can possibly live in a chronic state of stress, therefor making problem solving (i.e. any activity or subject in school) more difficult. So how can we fix this? This article suggests having our children practice deep breathing exercises or doing little activities to lesson the stress, such as going on a short fast walk. However, that may not be possible when our children are sitting in a classroom. I also found some techniques on a blog titled reading2008. This blog is written by an Ed.D, Howard Margolis and a Ph.D, Gary G. Brannigan. The two posts about relaxation techniques for children with LD are How to Reduce Anxiety: Yours and Your Child's and How to Reduce Anxiety: Yours and Your Child's - Part II. This blog is all about reading and other learning disabilities. It has a plethora of information. There is also a great book I use with Madison entitled What to Do When You Worry Too Much. These are just a few resources to use with your child if they are experiencing anxiety.

As I am always telling my friends and parents that I meet, we are our children's best advocates. It is up to us to pay attention to what is going on with them. It is not always something we want to see or perhaps admit to, but if we don't do what will be best for them, who will?

To be posted later: Madison's journey to date with anxiety