Rose's House on Special Needs

EEG and Pediatric Neurologist Referrals

2010-02-10T18:40:00.000-05:00

Before Austin fell we had already scheduled an appointment with the Pediatrician for a physical. We had hoped to get a referral to a neurologist to check out some of our concerns. Yesterday we kept that appointment. Austin seems to be recovering well, but the Doctor agreed that some of his symptoms should be evaluated further. The tingling in his legs, increased headaches, brief periods of confusion, dizziness, etc. are cause for concern. So his office is setting up appointments for another EEG and also to see a Pediatric Neurologist. I haven't heard yet when those appointments are going to be - the doctor's office will call when they are set up.

His main complaint right now is that his left ear feels like it is closing. It bothers me because that's the same side of his head the bleed was on. It doesn't hurt, just pressure. The doctor checked his ears yesterday and they looked fine. Austin had a little trouble with this yesterday but not enough that I remembered to mention it to the doctor. It's worse today and really getting on his nerves.

The Big Fall

2010-01-31T22:10:00.000-05:00

I want to say a big thank you to all my online friends who have been so supportive and during this time. I feel so blessed to know so many wonderful people.

We came home from the hospital yesterday afternoon. He has had some headaches but not really bad ones. And his head doesn't hurt all the time. Sometimes he seems a little hesitant when he talks and can be a little slow about answering questions, but that has gotten better throughout today.

His left side still bothers him quite a bit, he had tears in his eyes from the pain when we got to the truck after leaving the hospital. But that too has been getting better throughout the day, although he does hold himself very awkwardly when he walks. I keep thinking of that nursery rhyme "There was a crooked man" when I see him walk. But most of the time he has a smile on his face now when he walks instead of tears in his eyes.

There really were not very many answers provided by the time we left the hospital. We know that he had a subdural hematoma. It was a small one and it stopped fairly quickly.

My questions are more about why he fell. I know kids fall and hurt themselves. Austin has done it himself many times - tripping and hitting his head on the bookcase and needing stitches, flipping over the handle bars of his bike and badly bruising his ribs, breaking his little toe, etc. But this particular fall doesn't make sense to me.

I'll give a little background before I describe how he fell. We've noticed some things going on with him recently which have concerned us.

One incident was on a Sunday morning. I had noticed all morning that he seemed to be acting a little strange - more easily distracted than usual, standing in my space staring at me, and wandering off in the opposite direction from us with an absent look on his face in church. Then as we were standing in church singing he kept swaying oddly back and forth. I looked at him and he seemed okay so I asked him to stop. A few minutes later out of the corner of my eye I saw him doing it again but this time when I looked at him I realized something was wrong. His eyes were closed, he was pale and broken out in a sweat, he looked like he was trying to sit but couldn't be sure where the seat was so was half crouched swaying back and forth. I immediately got him seated and when he was able to open his eyes and talk again we went outside for some fresh air. He perked up but we decided to go on home. He went up to his room and rested for about 15 minutes and then he seemed back to normal.

A few mornings later I found him sleeping downstairs on the couch and when I asked him why he decided to sleep downstairs he had no idea how he had gotten there.

He has also started complaining of getting dizzy when he runs and of tingling in his legs.

A few times he has complained of just feeling weird and couldn't explain exactly how he felt weird. One day he said "I have something on my mind and I don't know what it is."

We had an appointment set up with his pediatrician for a physical and too talk about these things, and were hoping to get a referral to a neurologist. He has seen a neurologist in the past and when he was eight was put on Depakote for migraines and absence seizures. However since he had significant trouble with learning in some areas already and Depakote is thought to sometimes cause trouble with cognitive skills we decided after about two years to try taking him off of it and see how he did. He seemed to do okay. The staring spells did not come back and if we immediately gave him ibuprofen when his head started to hurt we could nearly always avoid a full blown migraine. His wonderful neurologist who Austin loved and I trusted completely has since passed away so now we will need to find another neurologist.

The evening Austin fell he was at his grandparents house. He had been riding bikes with some other kids and then they had decided to climb the walnut tree behind the house. Austin had just bought a new pair of binoculars and wanted to see what he could see from the tree. The child (Jonathan age 8) he was climbing with said he stopped on a lower branch and Austin went on up a little higher to get a better view. As Jonathan watched from below Austin found a place he wanted to look from, started to raise the binoculars to look through them, than put them back down and shut his eyes. He started to lean back and Jonathan said he was about to tell him he didn't think he should lean back like that when Austin fell. Jonathan said he yelled "Timber" to let anyone below know to move out of the way (I love the way this child thinks). Austin hit the ground sitting and then fell over. He had climbed 8 -10 feet. He laid on the ground and moaned. One of the other boys went to get an adult but by the time he got there he was coming around. Austin was crying but he got up and went in the house. He didn't want to go home (I was at home). He ate dinner and played with the other children there. Toward the end of the evening they watched a movie and during the movie Austin started dozing which is unusual for him. Then when he got up after the movie was over to get ready to come home he started complaining of pain in his side. By the time he got to the van to be brought home he was crying and when he came in the door at home he was almost hysterical. He sat down on the couch and refused to get up again to let me check his side. I got Doug (he's an EMT) to come check him over, while we were discussing what to do we noticed he gone from hysterical to dozing again so we decided to call the rescue squad and have him taken to the ER. There did x-rays and a CAT scan and found the hematoma (bleed).

Now he's restricted from lifting anything over 10 pounds for the next eight weeks, no running, climbing, biking, etc for the next eight weeks and no schoolwork for two weeks. We have an appointment with pediatrician Feb 9, and an appointment with the neurosurgeon in eight weeks to recheck the area that bled and decide what to do from there. We are also supposed to make an appointment with a pediatric neurologist for about the same time to discuss whether or not to continue with the seizure medication. He's on Dilantin now.

My feeling is that something happened before he fell that caused him to fall but the doctors don't seem to be interested in hearing that.Whether it was a seizure, or some other type of incident I believe something happened. It frustrates me not to be heard. The next time we have an appointment I will be prepared with a written account of what happened, the symptoms he's had leading up to this, and any other information that It think would be useful and they will listen. I hope. They also need to know that we have a family history of brain anuerysms.

Oh, and one side note. Amanda is sure I should have called my first blog post about Austin's fall "Big Boy Goes Splat!" She's been complaining ever since that I didn't. How's that for sisterly love!

Note - Austin does not remember climbing past Jonathan and starting to look through his binoculars, or why he stopped and closed his eyes. He says he does remember starting to fall and grabbing for the tree. It's another reason I believe there was an altered state of consciousness before he fell.

Update

2010-01-31T22:05:00.000-05:00

Written late Friday evening, January 29, 2010

Copied from my blog Rose's House

I feel much better now that I am here at the hospital with Austin. Doug does a great job with him but I was feeling the need to see for myself exactly what was going on. I needed to look into his eyes and hear his voice. So here I am.

The second CAT scan showed that the bleeding had stopped. Since then they've done a third CAT scan but I haven't heard the results from that yet. They also did an EEG but I haven't been told the results of that yet either.

They have started giving him Dilantin to help prevent any seizure activity. Based on what the other kids who saw him fall and his own recall (or lack of recall) of what happened the doctors are seriously wondering if he a seizure. He does have a history of absense seizures although we haven't been seeing those recently. In fact we took him off his medication for those several years ago.

He is eating and drinking well - enjoying pizza and spaghetti and sprite and milk. And now he's eating pudding.

When the Occupational Therapist came in too see him he did get confused trying to answer some of her questions and then he got upset. She also had him get up and walk a little which made him dizzy and made his head hurt. And that upset him even more.

He is complaining as well of his left side hurting quite a bit when he moves around very much. There is nothing visible on the outside and the x-rays didn't show any damage to his ribs. Austin says it doesn't hurt when we touch it, it's deep inside. The nurses are aware of this and are monitoring it. He was just given some Tylenol and they are going to check on him again soon to see if that helps.

In the meantime, Doug and Amanda are holding down the fort at home. With three little boys - ages 3, 2, and 1- to take care of I'm sure they're having lots of fun.

Small Brain Bleed

2010-01-31T22:01:00.000-05:00

Written early Friday January 29, 2010

Cut and pasted from my blog Rose's House.

We could really use everyone's prayers right now.

Earlier today my 13 year old fell while climbing a tree at his grandparents house. After the initial pain he seemed to be okay, ate dinner,and played with other kids. Several hours later after watching a movie he seemed to be dozing off which was unusual. Then when he went to get ready to come home he started complaining more of pain in his back and side. He also said his face felt funny. We couldn't see any bruises, or deformities but he kept complaining of the pain. Then he calmed down and seemed to be falling asleep again when we weren't talking to him. We decided to call the rescue squad and have him taken to the hospital and checked out.

At the hospital they did X-rays and a CAT scan. The X-rays of his ribs came back fine but the CAT scan showed a very small bleed in his brain. The Dr. said it will probably heal on it's own but just in case they want him nearer specialized equipment. So he was transferred to a larger hospital about 40 miles from us.

I really don't have any details about where in his brain the bleed is because Doug (and Amanda) went with him to the hospital while I stayed to keep things together here.

I will update when I know more.

IEP Checklist App for iPhone and iPod Touch

2010-01-25T21:42:00.000-05:00

I found this review of the IEP checklist app for iPhone and iPod Touch on Terri's Special Children Blog. You may want to check it out, it looks pretty cool.

Sleep Well, Kiddo

2010-01-23T21:38:00.001-05:00

It's nothing unusual for Austin to get an idea in his head and not let it go for a long time. So I guess I shouldn't have been surprised this morning to find out that he had stayed up all night. It seems to be his current obsession. I did think though that staying up until 6:00 AM qualified as staying up all night. And he did thatThursday night. But I guess because he fell asleep before I came to wake him up it didn't count.

Surprisingly he stayed awake all day yesterday and apparently all night last night. And did not fall asleep today until about four o'clock this afternoon. Now he is OUT. I'm not sure where this newest obsession came from but I do hope that now that he's succeeded in staying up one whole night he will stop doing this. I don't want to have to start getting up during the night to see if he's going to sleep. He's has always been the one I never had to worry about sleeping. He normally falls asleep fairly easily and sleeps well.

Sleep well, kiddo, tonight, and tomorrow night, and the next night. Please.

Interesting Communication Devices and a Cool Blog

2010-01-22T22:32:00.000-05:00

While am certainly no expert on communication devices these two caught my eye while I was scanning through the articles in my Google reader today.

The first one is called the Talk to Me 100 by SydSpeak and was designed by a speech therapist. There's a full review of the product here.

The other one is an eye tracking communication device that looks really interesting. This one is the Tobii C-Eye and the full review of this device can be found here

After looking at these two reviews I explored the more of this blog and was really impressed with information found here. The blog is called Teaching Learners With Multiple Special Needs and is filled with links to wonderful teaching resources, lesson ideas, and other valuable information. I think it would definitely be worth taking the time to check out.

Aspergers VS. Nonverbal Learning Disorder

2010-01-22T14:24:00.000-05:00

When my son received his diagnosis of Nonverbal Learning Disorder (NLD) he also scored as "high likely" for Asperger's Syndrome (AS). I found this very confusing for a long time and sometimes felt like the correct diagnosis should have been AS. Other times I felt that NLD was in fact the correct diagnosis. Still other times I . . . read more.

New PBS Series, "This Emotional Llife"

2010-01-08T18:31:00.000-05:00

I saw this series recommended over here on Gold to Refine and thought it sounded really interesting. Then I saw it mentioned again and decided to share it.

I will definitely be watching this series on-line over the next few days.

New PBS Series, "This Emotional Life," Features Social Psychology

By Social Psychology Network News

Source: Social Psychology Network News
"This Emotional Life," a 3-part PBS television documentary hosted by Harvard social psychologist Dan Gilbert, airs January 4-6. The series explores how to improve social relationships, cope with emotional issues, and become more positive and resilient. Each episode weaves together the personal stories of ordinary people and the latest in brain science research, along with comments from celebrities such as Chevy Chase, Larry David, Elizabeth...

The Sad Story of Zakhquery Price

2010-01-07T22:43:00.002-05:00

I've seen quite a lot written about this story recently and wanted to pass it on. I feel very sad for the family and for Zakh. All too often I've seen a child's needs repeatedly ignored or pushed aside because no one takes the time, effort and maybe even money to address these needs appropriately. Sometimes it's a result of a very broken system, sometimes it's ignorance, sometimes it's simply an unwillingness to put forth the effort to provide the services needed .

Please check out these articles and pass them on.

Fifth Grade Autistic Boy Charged With a Felony .

Zakhquery Price and the Danger of Incarcerating Our Youth

Staying Focused

2010-01-03T23:11:00.000-05:00

We've enjoyed this Christmas vacation but I am very glad to see the return of more structure again.

Too much unstructured time simply does not work well with some kids and Austin is one of them. All this unstructured time has led to more vocal tics, more rocking back and forth, more aimless wandering through the house, and in general more disorganized behaviour. It's driving me a little crazy and I believe it's frustrating for him as well.

I also think it's time for me to work a little harder on helping him plan his time so that he doesn't end up feeling restless and disorganized. In general I believe it's very important for a child to have plenty of free unstructured time, but in Austin's case I feel I need to help him find the tools for staying focused. Otherwise, he keeps ending up in no man's land and that's no fun for either of us.

Now that he is entering his teen years I am beginning to really look hard at giving him the tools to succeed as an adult. I know it is going to take a lot of hard work and perseverance. I also know that with a lot of hard work and perseverance we will get there successfully. One step at a time.

One. Step. At. A. Time.

2009-12-25T14:39:00.000-05:00

Merry Christmas!

Determination

2009-12-17T23:01:00.000-05:00

I was very proud of Austin yesterday.

Normally on Wednesday evening Doug takes our kids to church and he stays and helps with the children's program and then brings them home again. Yesterday he had some things he had to do for a tenant at our rental house and it really did not suit him to take them like he usually does. Since the church also has some vans and a bus Doug offered to call and arrange for a ride to church for Austin.

Austin really dislikes riding the vans and the bus. The noise and chaos the always ensues in a crowded vehicle of kids really bothers him. But he is determined that he is going to make a place for himself with this group of kids, and that he will find a friend. He also wants to learn as much as he can from the teacher in the class he attends. It was completely his choice whether to go or not and he decided to go. He talked several times about how much he dislikes the noise but remained determined. And he went.

Doug finished the work at the rental house in time to be able to pick him up from church so he would not have to ride the van home. I asked him if he was glad for his usual ride home and he said he was but he was glad he went.

Even though he has his struggles, Austin is a very determined young man. He realizes that he has some challenges and is determined not to let them hold him back. And that makes me very proud of him.

Balancing Act

2009-12-14T23:05:00.004-05:00

Amanda is getting to the point where she asks more and more often why? Why is my brother acting this way? Why does he talk nonstop (and I do mean nonstop, in circles, round and round the same subject)? Will he ever grow out of it? Why does he get so upset so quickly?

I have explained to her that everyone's brain works differently and his works a little more differently than the average person. We have talked about how it does not mean he isn't as smart or as talented as anyone else, it's just that he approaches life differently. But it's hard sometimes for her to understand. Especially when we've listened to a lengthy lecture on playing cards for the fifty eleventh time today.

And there are also the times when she feels that he is getting special treatment. When she has to be extra careful not to overwhelm him when he's on edge. There are times when she has to try to understand that he is not deliberately annoying her, and times when he freezes up when she's talking to him and she has to understand that he's not trying to ignore her and she just needs to give him a few minutes. And of course there are the times when a meltdown happens and she sometimes feels like he is not given the consequences he should have.

Yesterday Amanda and I spent a whole afternoon in the kitchen cooking together. No interruptions. Austin was watching TV and playing games on the computer. I realized again how important these times are when I simply focus on her and we spend time together doing the things she loves.

Sometimes she needs some "special" treatment too. Maybe a surprise treat just for her, a compliment when she's not expecting it. A reminder that she's just as important and special as her brother. And she definitely does deserve a big thank you for being as patient a sister as she is.

Every day is a balancing act but we are working on finding, as much as possible, the balance that works for all of us.

A Little About Me and My Interest In Special Needs

2009-12-13T22:30:00.000-05:00

When I was nine years old I experienced a sudden onset of Obsessive Compulsive symptoms. All the compulsions, the obsessive thoughts and the anxiety were there in what seemed to me a totally unexpected and bewildering rush.

For the next eleven years I found myself in a nightmare I couldn't wake up from. A variety of medications, dietary changes, and other treatments were tried but nothing seemed to really work. One medication in particular ( I don't remember the name of it anymore) was so bad it made my parents and I afraid to try any more medications.

In my early twenties I found myself having occasional breaks from the intensity of the disorder although it was still there and would make itself known in times of stress. I married and had two children.

Then in my late twenties I crashed hard again. My marriage was falling apart and I was a wreck. I couldn't sleep, couldn't function and needed constant help to keep everything from totally falling to pieces. My family and friends were a blessing and held things together for me during this time.

In desperation I went to the doctor and told him I had to do something and was willing to try medication again. This time he put me on Paxil. Once we found the dosage that was right for me there was a major difference. I was able to function again. I was able to think beyond the racing obsessive thoughts that were running through my head. I was able to do things without being interrupted by meaningless compulsions. It felt like a miracle.

I have been on Paxil now for about seven years and it is still working for me. I do occasionally have mild symptoms, usually when dealing with some type of unusual stress. But it's easily manageable and I am grateful.

Around the same time that I began taking Paxil I also took both of my children to see a counselor to help them deal with the stress in our home caused by the breakup of my marriage. The counselor quickly picked up that my son had some things going on that she felt needed to be evaluated. She referred him to a Child Development team for an assessment. This assessment showed that he has Nonverbal Learning Disorder. He also tested in the "High Likely" range for Asperger's Syndrome. This confirmed for me a lot of concerns I had been having but that others kept telling me were just overreaction.

A few years later I took training for and became a foster parent. In early 2007 a five month old baby boy was placed with me. At the time of placement he was in the hospital. He had been born at 27 weeks and was in very poor health. I was told he was probably blind and deaf. His reflexes were almost nonexistent. He did not respond to stimuli. He rarely cried unless subjected to a painful medical procedure. He frequently forgot to breathe and had to have an attached monitor at all times to alert us when that happened. He scared us many time and spent a lot more time in the hospital but eventually, around seven months old we began to see improvement. He began to show us there really was a little person in there. It's been a long struggle but he is now three years old and in many ways a typical little boy. We do know he lost some brain tissue due to lack of oxygen from some of the times that it was hard to get him to begin breathing again. There are still some tests that need to be done to rule out some other disorders. But we have come a lot further than we thought we could.

Along with my daughter I have chosen too homeschool both boys and we're enjoying it.

I also have a childcare business that I run from my home and have provided care for a lot of children with a variety of special needs. A partial list includes
-Autism
-ADHD
-Bipolar Disorder
-Reactive Attachment Disorder
-Oppositional Defiant Disorder
-Developmental Delays
-Fetal Alchohol Syndrome

I do not have a degree in special education or, honestly, any degree at all. But I have read widely, you could say obsessively, I have experienced much and I am always looking for ways to learn more. What I write in this blog is my own opinion and should not be taken for advice from a professional. But I am looking forward to sharing this journey with others who are on the some path.