Growth Hormone Deficiency in Children-A Mother's Journey

Celebrities and Athletes Drug Abuse is Killing Little Kids

2011-08-24T18:21:00.004-04:00

Preface

Increasingly, celebrities and nationally recognized athletes are being identified and arrested for abuse or possession of growth hormone. Undoubtedly, there are many others abusing this drug with false ideas of endless youth or muscle strength.

To all those who abuse this drug,

To those who report this drug only for its cosmetic use without also validating its real medical importance, &

To those who deny medically ill children and adults their right to insurance payment for this treatment-

STOP!

You are killing little kid’s chances and affected adults rights for a healthy life!

Hidden in the shadows of our world are little known, but very powerful people who control everything in our lives. Their decisions control what we see on television all the way down to the items we have to choose from in the grocery store. To some extent, everything we think we have a choice of- is already pre-chosen for us. And that is probably a good thing (to an extent). The world needs some type of order and control in order to be a peaceful place. We, the regular "normal" working people, get it. But when we are quietly being manipulated at the expense of our own children’s health and well being…we no longer sit still nor remain quiet.

It seems as if these select people sitting at the top of large corporations have gained enough confidence to unequivocally say…growth hormone is not medically needed for anyone- deny all claims. "They" are probably thrilled each time an athlete or celebrity is arrested for possession or abuse of this drug. If the public is against this drug, they can "get away with" denying insurance payments for truly needy children and or adults. After all, insurance companies save thousands of dollars for each day and each child they deny. This happens each day without any thought to the children's bodies ravaged by a lack of medical attention along the way. I can imagine their thoughts…it’s a rare condition, how many people will rally to their defense if we deny some kids? It’s not like we are denying something that they think is life saving.

For parents of growth affected children, this trend is beyond alarming. Denying medically needy children growth hormone treatments can shorten their life spans, cause heart, lung and bone problems, invoke osteoporosis and decrease the quality of their health in many other ways throughout their lifetime. (This by the way, leads to more insurance claims down the road which could have been avoided. But that is not important to those watching this years “bottom line”!)

Growth hormone is a crucial hormone for every living creature. For those whose bodies cannot make or use it properly, they actually rely upon this medicine for life. The impact of going without it may not be immediate in all cases but rather it would be a slow, torturous debilitating death. Some nationally syndicated news programs have implied that growth hormone is used as a cosmetic drug which is used primarily to give short children an edge of being taller. Additionally, many newspapers, magazines, and other media frequently report about the latest scandal of celebrities and athletes drug abuse. Thankfully, some true journalists on local levels have performed their due diligence and reported the facts about how essential this medical treatment is for children and ill adults.

So to get to the bottom of this medical insurance problem we had to wonder, who does this sensationalized reporting of growth hormone abuse benefit? It does not benefit those truly in need of this medicine, it does not benefit the poor sap who was convinced into thinking he or she needed it to "stay ahead", so who benefits?

Sensational stories do feed our curiosity about high profile people. And sensational stories do sell more papers and increase viewer ratings. But ultimately who truly benefits? You don't benefit, I don't get anything, certainly the sick kids don't benefit...The magazine owners, television owners etc. make a profit…but it is a small one time thing...unless repeated stories encouraged. Who else…on an even higher level gets something beneficial from this abuse?

I find it “funny” that at the same time these stories become news, families begin to report insurance company denials for their kids cases in record numbers. Did this happen years ago when reports of the abuse first started creeping into the media…you bet they did!

So who is using what or who?

In order to understand what is going on today, you have to look at the big picture- so hang on!

The Beginning –

Growth hormone was first identified and used as a medical therapy back in the 50’s. And rather than bore you with tons of medical “junk” I will simply say that prior to the mid 1980's growth hormone was VERY difficult to get and very few people knew about it. However, in 1985 a completely new process of making medicine was discovered. This scientific breakthrough technology allowed for the clean and safe “reproduction” of a bio-identical growth hormone (and other desperately needed medicines). The cost to develop the technology was VERY expensive and the process to actually make these medicines is also expensive, therefore-the medicine is expensive.

Initially, there were many studies about this "new" growth hormone. This meant that pharmaceutical companies paid the costs (physician’s charges and medicine bills) for the children's medical care. However, after the studies were completed and everything pointed to a very successful and safe medicine, the medicine became available to everyone who "fit" the FDA's guidelines. As the years went on, news of a safe treatment for the kids spread and physicians began referring children and adults to specialists for help. It took a while for this transition to happen but by the mid 1990's most everyone had heard something about growth hormone. This increase in awareness meant that more children were actually getting help and.....insurance claims were filed. As an FDA approved drug, insurance companies were required to pay for this treatment.

Ultimately, and eventually parents began to call The MAGIC Foundation for help. We were told about insurance policies which had been "changed” to exclude growth hormone specifically from their policies, or begin to mask this discrimination by rejecting all “injectables” (this includes insulin unless otherwise stipulated) in their policies. This tightening of what they would and would not cover has become even more detailed today. Insurance companies have begun to stipulate that they will pay for growth hormone for certain conditions but will not pay for other conditions despite the FDA approval for those conditions. (These include conditions in which the children are experiencing medical challenges and a severe lack of normal growth.)

Unexpected numbers of ill children are now living normal and healthy lives thanks to the various new medicines developed via biotechnology. This must have sent the Insurance companies into planning panics as other drugs were and will continue to be, on the horizon using this same new technology. They will not be cheap. But what is the price of having a healthy child? If you work hard, do everything right to provide for your family, pay your insurance premiums without fail, why should you not get what you have worked and paid for?

So from the Insurance industry standpoint, they must have wondered; how can we argue against allowing this medical treatment without looking like a monster to the public as we financially need to deny covering this medical treatment? From my standpoint as a mom and consumer, if you are profiting by millions and millions of dollars each year, why would you deny my child?

Some companies simply refused to cover the medicine. However, parents began to fight against “paper pushers” having a voice in their child’s medical care. Some parents gathered in groups and others were up against such a wall of NO that they had to go public and approached the media with their personal plight. Insurance companies want to look good to the public so that they can sell more policies and to their stockholders. So going public is very bad publicity! Other insurers began to quietly deny the drug, or to place harsh restrictions and criteria prior to covering this treatment. Some insurers required that children undergo not just one but multiple hours of repetitive tests (different types of the same test) to verify the diagnosis. The amazing thing was that these decisions were being made by people employed by Insurance companies who were not specialists in this medical issue! Yet, they had the power to deny little kids a desperately needed hormone to make them healthy!

In the past couple of years, we have seen trends whereas the Insurance companies seem to automatically deny all growth hormone claims. Such claims seem to get lost in endless mountains of “proper process”. With denial letters lacking any “specific” details for the denial. If families press for the exact reasons, ridiculous excuses, such as they were filed with the wrong diagnosis, were commonplace. It seems as if insurance companies have mastered the game of stalling the claims. So thinking “deep” again, we had to wonder; What does stalling a claim accomplish? Hmmm… Could it be that for each month they stall the start of an authorized medical treatment they save thousands of dollars? Who does this benefit? Reason would dictate that insurance chairmen look better to their stockholders if their bottom line looks good…But at the expense of ill children! What happened to ethics and decency?

We have heard arguments about the “prohibitive costs” or “cosmetic therapy” as being reasons for denial of many growth hormone claims. We could counter that argument with an examination of the salaries of the insurance company management. As hard working middle America people, we believe that millions and millions of dollars for one person’s salary is prohibitive. However, we do not begrudge anyone earning such a salary…that is until that person denies a child health care so he or she can maintain his own salary. This is particularly true when parents are paying his company a premium to ensure health coverage for their child.

Please do not misinterpret my argument here, I am neither a socialist nor a communist and do not agree with socialized medicine. (I have heard horror stories from

Canada

England

and many countries where socialized medicine exists and definitely prefer our system). But I do believe in ethics and our current system is in serious need of refreshing that concept.

Now imagine it is 1985 and the national and local press has been doing some small stories about this new wonder technology which now can replicate growth hormone.

-How does an Insurance company prepare for the inevitable expense? Surely they realized that this problem was only going to increase. Growth hormone was proving to be crucial for more other healing issues such as burn victims! Could media reports be encouraged which would show the sensational aspects of how it builds muscle in a deficient body?

To be honest this entire concept was a joke 10 years ago. As "normal" people we do not have the luxury of focusing on the “bigger” picture. Instead we have to worry about paying the bills coming in next week. This narrow focus is what people in the shadows rely on. Keep them too busy to organize together and things will be different before they know it and then it will be too late. They are too tired from helping their kids with homework, doing their job, worrying about everything in their little worlds to take time to do anything (make a phone call, send an email or write a letter to a politician or television advertisers) if they see a problem. They don’t have the time, energy or desire to see any big picture.

If that is true-we (the little people) deserve everything we get!

So what I want to say is this:

Attention-

Mike Jacobs

Roger Clemens

Barry Bonds

Sylvester Stallone

Suzanne Sommers

Jason Grimsley

Keith Richards

Tyler Perry

Wyclef Jean

Timbaland

Chris Benoit

Mary J. Blige

50 Cent

(Excuse me if I listed you falsely. I got your name from a list on this website: http://www.kensavage.com/archives/hgh-and-celebrities/ )

and anyone else who is trying to pharmaceutical their way through life instead of doing the work...as a public person what you do has a ripple effect in more ways that you imagine. Your personal abuse enables people to use you to destroy the medical opportunities of innocent and ill children. Stop....Think....and be aware.

Savy business people look at the current situations and very long term paths. They are not like you or I struggling to make it with a day to day, maybe even a few years planned. With these guys, everything is planned waaay in advance. It is NOT uncommon for them to have a 20 year plan. Business moves and scenarios are calculated and maneuvered into place. This is what they do, this is the time they can afford to wait. They have the resources and business smarts to do it all.

So thinking from that mindset, could it be possible....that in order to sway public opinion against growth hormone, that "they" had to dangle the carrot (the benefits of growth hormone) out there knowing that some high profile people who struggle to stay on top would jump on it.....abuse it...and get caught? Once it happened..."they" could use that public curiosity and media to turn public opinion again growth hormone all together? Hmmmm

Stop....Think...and be aware.

So much for medical advancements

2011-03-12T15:03:00.000-05:00

Ok- so now things are normal for my daughter- thank God! Now all we have to focus on is getting her son (with many indications of an autoimmune- maybe GH problem but tests are conflicting) some help! He is only 5 years old, has autoimmune problems like arthritis, psoriasis and now his bones are literally dissolving! OMG!

And I went to a medical conference last week and was very fortunate to get some one on one time with one of the country's leading adult endo's to explain our family history and my personal medical "woe's". He said I needed better care and that it looked like someone had dropped the ball on my issues for decades! At what point do we take a side and believe anyone? I think the answer to that question is when we actually start feeling better! And that has not happened for me yet. But after speaking with him....maybe there is light at the end of the tunnel.

On a good note, another mom who I have been helping for 3 years now (her daughter is now 28 and was on GH as a child but the adult endo's don't want to "revisit" that possibility) is finally in competent care and after gaining weight, loosing hormone control on many fronts, sleeping non stop, loosing muscle etc....is finally- FINALLY getting back on the drugs she should never have come off of...There are some miracles in this world! YAY!

So for now- I keep trying to get up each day and hope that my heart rhythm holds up long enough for me to get to someone with good knowledge and skills! Here's to hoping!!!

Funny how time goes by so quickly!

2011-01-05T01:32:00.000-05:00

One year later...weight still dropping...vision good but some damage to tear ducts during the 10 year -duh huh phase???...when no one but dumb old meddling mom thought she was still GHD. So we are blessed! I wish I were made out of money so that I could fly to the adult endo outside of Kansas City who was so taken aback that I would be in my adult daughters appointment with her, and holy cow---ask him questions...that he asked- "where did you get YOUR training..because that's not what I learned at Harvard." OMG- OMG- OMG!!!! Is Harvard teaching omnipotence instead of medicine these days? I doubt it. But apparently, some good old customer training wouldn't help med students.

BioSimilars, BioEquivalents,BioIdenticals Say What?

2010-06-08T16:05:00.000-04:00

Ok as the world progresses so does medical technology. And then the "me too" greed sets in. Such is the case with medicine.

As pharmaceutical companies find a cure or a treatment for a condition (I am going to use growth hormone deficiency as my example because I know a little about it)...they spend millions and sometimes even billions of dollars in R & D (Research & Development) to develop the drugs. And when they go through the process they do testing in the labs, and after years of refining their information and animal testing, they go into trials with people. And even more years later, IF the trials all prove "good" they approach the FDA (Food and Drug Administration) for a license to provide the drug to the public.

This process takes years and years and MAJOR money. It is also HIGHLY scrutinized and evaluated on many levels. And to give drug companies the incentive to keep doing research for cures etc. they are granted a license to be able to exclusively sell their product (without anyone being able to copy and sell it cheaper) for a few years (around 7 years I think). This is good because without this incentive, drug companies would have no reason to search for cures. Why would they put out that kind of time and HUGE investment, if they couldn't be guaranteed that some "me too" company would "Copy" their product and sell it cheaper? The answer is...they wouldn't! So for all of us who use any kind of medicine...we need drug companies to be protected (within reason) so that they can keep searching for new drugs and better drugs.

Now for those of us with kids who have needed growth hormone, we all know that process is important but we also went into shock when we found out how much growth hormone cost! I know I did! We went into full blown panic. But to be fair, drug companies set the cost of drugs they discover based on the patient population that they expect to benefit from a drug. In other words, because they "estimated" that only 20,000 kids would need the drug....how do they recoup their millions of R & D? They price it high! And Insurance companies fight the parents trying to help their kids...and the world gets nasty and messy. In the end, it is the kids who may go without the med, the parents who are destroyed with guilt or panic over how to help their kids who are hurt by what should have been a medical miracle.

So drug companies have put "help" out there to families. Thank God because no Insurance company would!

And now that GH has been available via a safe BioIdentical drug for a while....the "me too's" are starting to pop up.

So what does this mean?

It means that companies who have a "bioSimiliar" or "bioEquivalent" drug (which is NOT the exact as the original products) can now make deals with Insurance companies to FORCE them to only pay for their "cheaper" drugs.

Why do I think this is dangerous?

1. It allows for people "in the world somewhere" with Insurance companies to mandate medical treatment.
2. It allows for a less than optimum product to be used without regard to the patients in favor of an economic savings.
3. It allows for a product which does NOT go through the same rigorous testing-to be used on ...US! And our children....

And with the "new" health care plan being set up....they are favoring the generics instead of the name brand original drugs. If your body cannot benefit or has a reaction to the less than original drug (meaning the generic)...you have no choice! Either pay out of pocket or ....suffer!

When people work hard to provide Insurance for their families, pay each month....and then are told NO...what is going on? Next we will be fined if we brush our teeth from left to right instead of right to left!
There are so many people in this country who want to do good but the opportunity is not there. Some how someone needs to set up something and hold true so that the faith in our system can be restored. For the people...by the people!

The reporter became speechless during the interview with George Chmiel!

2010-04-14T01:25:00.000-04:00

You know...every once in a while someone does something which is so self sacrificing that it just amazes people. And when you hear about these people, you want to know more! When I heard about George Chmiel...it was like that.

George is a young guy (at the time I first ..."met" him he was 28 years old) who is obviously in the prime of his life. He excels at everything...so over achiever is probably his nickname. At this young age, he is already the Vice President of Structured Products for Bank of America/Merrill Lynch in the Boston office. He is good looking, single, funny and is one of those super humans that most of the rest of us...can only aspire to be.

And to top things off, he devotes his free time to a charity by doing something so amazing that if impacts thousands and thousands of people around the world! OMG!
He does it quietly, without asking for attention, but in such a way as to command our attention and admiration. Television interviewers have even been "speechless" talking to him...he is just that astounding! (See this recent interview as an example: http://www.thebostonchannel.com/video/23135683/index.html .)

His mom says that he has always been a challenge and I can imagine that is an understatement because how do you tame a drive that big? Do you even attempt to slow down a heart driven to help ill children? He is not even married nor a father yet!

The story about George Chmiel and how all of this came about is reaching many sources via Facebook and Twitter. Some of his local media have even conducted interviews...and yet without fanfare- he just keeps training for his ultra marathons, despite his damaged wrist and surgeries, all for children! He does hear from families sometimes but there is a trickle down effect which he may never know. And still he goes on....

He completed a Sahara Desert 155 mile marathon in only 5 days and raised an astounding $66,000+ for The MAGIC Foundation. And now, 6 months later, he is at it again! His goal is to raise $100,000 for MAGIC and to possibly run a marathon on all 7 continents.

Many families whose children are impacted and touched by George's efforts have contacted the national media...so far nothing. But families keep talking to each other and spreading the word about this super human effort and man. I can only pray that someday, someone with Good Morning America, the Today Show or maybe even Oprah will learn about George Chmiel because he deserves to be recognized!!!

Thank God for George Chmiel and those who selflessly work to help children. I hope those of you reading this simple BLOG pass on the information-read his personal BLOG at http://www.luciandgeorge.com/ and maybe even post something to him. If "we" do not support the good guys of this world...what does that say about us? As Martin Luther King, Jr. said; "Our lives begin to end the day we become silent about things that matter."

UGH

2010-04-08T00:02:00.000-04:00

Some days all you can say is UGH and hope that tomorrow brings a better mood. Today is one of those days.

I have been fighting for people to understand the serious nature of growth hormone deficiency for 20+ years. And it seems as if the general perception is still that growth hormone is just to make kids taller. I have talked to thousands of people; been interviewed by televsion, newspaper and radio reporters in many cities...spoken to medical groups, and groups of parents....and still the lack of understanding prevails. UGH

Poor Old Guy

2010-03-25T15:18:00.000-04:00

Ok- as of today I must add wild cats to the list of things which drive my husband nuts!
We have had this wild, scruffy, long haired old back tom cat hanging around my house for almost 2 months now. He "sprays" everything! My yard furniture, kids swing, house, lawnmower etc. And heaven forbid if we leave the garage door open- then he sneaks in and sprays everything else! It has been a nightmare of scents!

We have called animal control, we have laid traps with expensive tuna in it, and everything else we could think of....nothing has trapped nor stopped this monster.

This morning he started a battle next to the house with my little girl cat. The noise they were making was horrible! It sounded like someone dying out there. So my husband takes off running full speed ahead to "run him off".

Well as everyone knows, full speed ahead for a almost 52 year old man...is not what it once was but in all honesty this old guy is really pretty quick even now. I was amazed at how fast he went until he suddenly stopped and began hopping on one leg! Yep- you guessed it- he pulled a big muscle running from his knee all the way up! OUCH!

He did manage to run the wild cat off, but now he is in bed with drugs.....what a way to start the day!

My Mosquito Man

2010-03-24T12:52:00.003-04:00

My husband hates HATES mosquitoes. They drive him NUTS! And because we live in the south....he is annoyed quite often! Lucky me!

If he hears a mosquito flying around his head in the middle of the night...
He jumps out of bed faster than Superman...seriously-I am not kidding!
Then he turns every light in the bedroom....including the 50 inch TV...ON

Then he waits....
And waits...
And waits some more until....
He spots the tormentor....
Needless to say...by this time I am wide awake and thrilled about it! UGH

He has perfected this routine-
If he doesn't see the mosquito right away...
He will begin to turn off the lights one by one....
Goal? To stop blinding the mosquito??? Noooo-
The goal is to "herd" the mosquito to the last light turned on so he can be spotted.
Ok- I will give him points for intelligence on that one...

I have gotten so used to his obsession that I rarely notice anymore...however.... :-)

One evening I was in the kitchen and I heard a HUGE thud....
Now don't get me wrong- I was used to hearing pillows hit the wall, shoes being thrown at a passing mosquito...etc. but this was different.
It was the kind of thud that got your attention and was followed by complete silence....
Scary as hell silence and I took off running towards the bedroom.

My poor mosquito man had been jumping (literally) around the room after what must have been a particularly stealthy mosquito. Now to give you some idea...my husband has had no ballet training- he is a guys guy... so frolicking about in a room full of furniture...not the best scenario for the guy. And when running and jumping from the floor to the bed....miss stepped! His big toe got stuck between the bed frame and the mattress!

There he was...face down on the bed with his legs pinned up underneath him and he was gripping his foot! Not good!!!! And to top it off- he was going into shock. Long story short: I got him taken care of- no worries!!! I do really adore and love this man...but as you will learn from this blog...he makes it way toooo easy to write about! :-)

New House Rule: When chasing mosquitoes- one must wear shoes.

After the Growing Years -Final

2010-03-24T01:51:00.001-04:00

So at the doctor's office we learned....she needed to be on growth hormone as an adult! And she would most likely need it for the rest of her life but we had to watch her very carefully for the first 6 months to make sure everything was "good".

It took another frustrating 2 months before all the paperwork, Insurance, etc. all went through...but she finally got her med's. And after only 10 days of being back on it (finally)...her vision began to improve-the headaches stopped and she stopped all of her heart med's...Guess what- she didn't need it anymore! The neurocardiosyncopy (passing out) was essentially gone! And after only a few months she was gaining a normal persons strength...meaning she could walk...drive...play with her kids...and her hair started growing back (instead of looking like an old lady with old age hair loss).

Three months after being back on growth hormone, I flew her back to the pediatric endocrinologist for her check up....all systems PERFECT! YAY-YAY-YAY!!!!!!!!
Another 3 months later....still good! So we were able to finally switch her to a local adult endocrinologist in her area who could monitor her from that point forward.

In our house I used to drive the kids nuts by saying "mom is always right". And if they argued...I would let them learn something the hard way and then say...."mom is always right" (instead of "I told you so"). Nice to know that I have not lost my touch as my brain is definitely aging- so I doubt I will have many more of these opportunities! :-)

So today, she is getting healthy again. Her lung strength is getting back to normal. She walks every night and she is loosing weight. (I am so jealous!) Her mind is sharp and her smile is contagious as it once was...live is good...not perfect....but really REALLY good!

And now that I have fulfilled my promise to write all of this journey down...I can get on with more humorous stories in the future. If anyone needs help...visit;
http://www.magicfoundation.org/ !

After the Growing Years Part 6

2010-03-24T01:15:00.001-04:00

Dad told me that my mom was really sick and "in trouble". She was having "spasms" lasting for hours and rarely slept because of pain etc....and his brother had terminal cancer and only had weeks left. He had gone to see him a few weeks earlier but now....he had his hands full. It was an agonizing decision and horrible choice to make but ultimately my daughter convinced me to go to the greater emergency at that time. And so I packed up my computer, loaded my car and headed out for the 19 hour drive home. I felt horrible. I had left my nearly blind daughter, grandsons and my son in law to basically fend for themselves.

However, by this time I had my daughter in agreement that IF I could convince her pediatric endocrinologist (thank God he had not retired yet) to see her...she would go. I was so hopeful that I could pull this off....

When I got back home to Georgia, I unpacked...slept for 7 hours and then drove 4 more hours south...to my parent's house. My poor husband! Thank goodness he is so understanding and supportive of everything. He had been at our home in Georgia the entire time-ill from kidney failure! But he was managing to go to school and helped by my rock-youngest daughter and her family in my absence.

So....when I got to Dad's I was literally horrified to see the condition of my mother. She only weighed 89 pounds and was in horrible pain. It was like a pharmacy there as she had time lines for what pills when....long story! To summarize...I would be in Georgia all week and drive to Florida to help Dad on weekends. I did this for almost 2 months when finally it became so apparent that Dad would not go against Mom's wishes and force her into the hospital without STRONG persuasion. So that is what I did. I had been at there house for 10 days straight-afraid to leave either of them. Dad was exhausted from being up and down with mom 24 hours a day (she rarely slept and when she did it was usually less than 2 hours at a time). Mom was irrational from pain.
So I told Dad that in the morning....if he had not convinced Mom to go to the hospital- I would call 911 and force her there....Thankfully he was able to convince her by telling her that she was dying!

The next morning she said her goodbye's to my brother and I before leaving for the hospital. She was really that sick.

Long story short...she is still with us today. YAY! It has been a year now. She still battles with some spasms, but is much much better. However, their lives are changed as they are confined to the house for the most part. They do get out some, and dad has some help so he can get out several times each week, but mostly they are at home.

All the while this is going on with my parents, I am still trying to help Missy via the phone and managed to get her an appointment with her childhood pediatric endocrinologist. It took me almost 11 years to convince her to do this and I was relieved she had agreed and everything was a "go"! To heck with Insurance....I would pay for this man's opinion. He had treated her for years as a child and I knew first hand...he was brilliant!

I flew Missy and her youngest son down for a long weekend coinciding with the doctor's visit. My oldest grandson was in school and stayed with his Dad.

So off we go to the appointment I have been praying for .... for a decade! It took an hour and a half to get there and I was worried that I might be wrong....she may be VERY sick and all of my "theories" about it being a result of not being on growth hormone still as an adult....could be wrong. That would have been a HUGE crow to swallow as I am not a quiet person when I believe something! But my "gut" just kept pressing on that I was not wrong-mother's instincts are so strong!

So anyway, we get to his office after going to the wrong place...who knew he moved his office? It was like old times in his waiting room filled with things for kids...only now my kid- was a mom herself! How weird and desperate were we?! And so after the normal paperwork etc. we are escorted to the back where we wait in the exam room. It was just a few minutes before this kind face of yesteryear appeared in the doorway. And at that exact instant- I felt peace. I felt a calm that I had not experienced for years....everything was going to be ok. But before he says his normal "hi", he looks at my daughter and says; "what the heck happened to you?" I guess he was startled at how sick she was!

After the growing Years Part 5

2010-03-22T00:37:00.002-04:00

When a 28 year old "child" calls home for help, it gets your attention. And when a child who has had to fight for her health her entire life calls for help saying she is now going blind....it sets in a PANIC!

I thought my stomach was going to come up through my mouth! I could hardly believe my ears....I tried to sound as calm as I could...What do you mean-going blind? What is going on?

She said, "Well you know how I was having headaches all the time while I was at your house?"

Yes....I responded.

She explained, "When I got home I went back to the eye doctor and told him that I thought something was wrong with the glasses because I can hardly see. And so he double checked his notes and the glasses and said that everything was correct. So he had me go back in the exam room to look at me again...and he could not get me corrected better than 20/200 at the very best. So he called his friend a neuro-ophthamologist for an emergency appointment. I went and saw him and he said that the muscles behind my eyes are deteriorating for some unknown reason and I am going blind. He called it something...but I can't remember what right this minute. Mom-can you come up her now?! I need help, I can't take care of my kids and I am scared."

Of course...I said yes. I immediately packed clothes, my computer (still had to work even though I was remote). I was driving 1100 miles instead of flying because I was certain I would need my car. I was supposed to leave the next morning...but with that going on who can sleep? Not me! And so 2 hours after she called I was on the road driving for 19 hours straight to get to her ASAP.

The entire trip there I went over a million things in my mind. Every detail of her life and medical history. And by the time I got there, I was absolutely convinced that she needed an endocrinologist to test her growth hormone. There was one glitch....no one would believe me. So I went there knowing that I would have to sit back for a little while and just be the old lady support...until they let me take the bull by the horns.

Now you don't know me...but I don't sit back very well...I am a can-do, take charge personality...so I failed at what had been good intentions...but I really REALLY tried.
It took me a few weeks but (with the help of my wonderful husband who told Bryan that if anyone knew what they were talking about regarding Missy's health it was me....[thank you sweetie!] I was able to finally convince my daughters husband to push her try an endocrinologist.

Thankfully Bryan was successful and she was seriously desperate. She agreed to see an endocrinologist. Finally! I was making some progress...or so I thought.

So we had to work within her Insurance realities.....it took a few weeks but we did manage an emergency appointment with an adult endocrinologist who was highly recommended and on her Insurance list.

In the meantime, we kept all the curtains closed in the house- light sent her head into severe pain....we kept only a minimal amount of candles going at night....sounds were kept down (and with one 4 and one 5 year old little boys...that was tough!)...I got the kids to school, gymnastics etc. and played mom to the boys and to my daughter while her husband kept the income going/insurance covered/ and tried to hold his family together. I constantly searched the Internet at night and fought with my daughter on what to investigate or not. She lived for her next dose of Tylenol etc. the pain was relentless.

Finally, came the day of the endocrinology appointment. Bryan, Missy and I loaded up the boys and headed an hour and a half (one way) to this "guru"....Amazingly we waited only a brief time before being led into a room. He came in and we handed him all the records and tests from years of her health stuf.....He literally flipped (not studying) the massive time line of events and symptoms we had built, glanced over some of the labs....and then he said that her endocrine system "is not responsible for her current condition."

Bryan and Missy both looked at me in shock. Being young, they really did not know what to do at that point- so I spoke up. I asked questions like; What about her symptoms?, What about her thyroid? What about her progesterone level?

At this point the doctor seemed curious or annoyed (I could not tell which and really did not care) ....he asked if I was a nurse...UGH!!! (We need health care reform? How about ego reform!)
I said, No.
Then he looked at Missy and asked her, Are you pregnant or could you be pregnant?
She said, No.
Then he said that progesterone had nothing to do with anyone who is not pregnant...
AAHHH---at that point I realized that this simple/non-medical mom knew more than he did and he was not going to be receptive to me......so I sat back, crossed my arms and shut up until we could leave. Ultimately, he said that all of her problems were nothing in his area of endocrinology and best of luck.

It was a waste of time. He had no clue. To say we were disappointed is a HUGE understatement.

So we loaded everyone up, put the sunglasses and scarf around her eyes to protect her as much as possible and got her back in the car....to head home.

I just wanted to scream and beat someone at that point. We all did. My son in law probably wanted to beat me because I kept pressing and pressing my daughter. We were caught in a cycle of "what?"-"don't know"...-"isn't my area".....etc. And nothing was stopping her pain nor rapid vision loss.

By the time I had been living there for about 2 months, we had taken her to MANY doctors....and were still getting no where...it was terrifying as she just got worse and worse each week. Then my phone rang and it was my dad....

After the Growing Years Part 4

2010-03-19T16:05:00.000-04:00

Ok- so now we have her standing for brief amounts of time and getting a bit better. Life goes on! She went to college, taking online classes and attending those she could. Graduated and got married! Her husband Bryan is an absolute dream. He tolerated all of the extra care and attention she required without complaint. Don't have a clue how he did it...but he did!

And a few years later she had 2 (separate not twins) healthy and outgoing baby boys. I am now officially old....grandma was my new title but I go by Nana....it seems to take the edge off of the "oldness" of the word...grandma! But I LOVE it! Finally we had some boys around and they are definitely different from baby girls!

So anyway, life went on. Missy was always at one doctor or another struggling to keep upright and provide for her babies, and always had a huge smile on her face. Don't know how but she is really happy by nature and always has been...thank God. She was a frequent visitor with the cardiologists to keep her blood pressure up, and the endocrinologist as her once simple case of hypothyroidism transferred into Hashimoto's thyroiditis...and then she still had the "spots" which would blister, scab and scar her everywhere....and then....she started loosing her hair. She had really dark brown hair so the hair loss was very noticeable. She looked like an old woman who died her hair...it was so thin on the top front areas.

The final straw came in Nov-Dec. of 2009. Their entire family had driven from Missouri to Georgia to spend the holidays (an entire month) with my husband and me. Arriving at Thanksgiving I noticed a huge change in her...but never told her how started I was. Instead I did the normal mom nagging which she was used to! I did this to get her attention without alarming her. Prior to their trip down, she had been to the ophthamologist for a change in her eye glasses. And when she got to my house, she made the comment that she thought the doctor or someone must have made the glasses wrong...they were good the day she got them (or so she thought) but just a few days later- she said her vision was worse than before she got the new glasses.

While at my house she was constantly taking migraine med's attributing it to her eye strain.

They drove back to Missouri the day after Christmas.

Ten days after getting home...she called me....Mom-can you come live with me for a while? They say I am going blind and I need you.

After the Growing Years Part 3

2010-03-18T13:11:00.001-04:00

She said that the doctors had ruled out liver failure...WHEW! But how ...what.... I asked her to start at the beginning a tell me what happened and why she was all wired up!

She began to explain that during a group jog she started feeling "bad" but kept pressing on. Then she felt light headed and fell down. She got back up. But then she fell again and every time she tried to get up- she "passed out". She said she could hear what people were saying sometimes and others she could not. So one of the other kids who was running in the group sought adult help who managed to get her to the Air Force Base Hospital.

The doctor on base had never seen anything like this and started some labs....her liver enzymes were out of whack and he "assumed" liver failure. (That is when I got the phone call.) The doctor knew that no local hospital could help her quickly and expertly enough so he med vac'd her an hour and a half away to Tallahassee which is where I saw her.

And as she had such a priority case, most of her labs etc. had been done by the time I got there....15 hours after she fell down!

But now we were facing an unknown condition. Why would someone just suddenly start "passing out"? And doing it EVERY single time she tried to stand up and walk?
She was fine while laying down- nothing and I mean nothing-abnormal showed up while she was laying down.....and how did this perfectly healthy kid go from outstanding at the beginning of a day- to out of it completely by the afternoon?

So more tests, and more tests were ordered....She saw neurologists, cardiologists, etc. No one had any answers....it was even proposed that she may be "acting" for attention. AHHH! And then came a test called the "tilt table". It is like a treadmill with wires and more wires etc. And it proved that she had something called... neurocardiogenic syncopy. This meant (in lay terms) that when she was laying down...her heart was high normal....but when her body was commanded to produce more (to stand up etc.) it actually did the opposite! So it was like she was passing out or going to sleep at the same time.

Following this test, the doctor explained to my husband and I the details of this latest medical challenge. I heard words that..... as a Mom I had heard before....no cures-some treatments seem to help a little...lifetime debilitating.....

I did not doubt that they found what they found. But because this started only weeks after she stopped growth hormone therapy....I was VERY suspicious that she needed to go back on it. But because she had gotten sick in France...and no medical articles documented anything like this....my thoughts were discounted.

And so we took her home and began a trial and error routine with a variety of med's to try and keep her "upright". She had to stop going to school and lost her scholarship to be an Air Force Pilot. It was so bad that I even had to help her to the bathroom! Most all of her friends went on with their lives but a few stayed in touch and gave her an emotional light which was beyond description.

This kid is amazing. She fought to have a good outlook on life. She put up with stares as we helped her get out into the world by going to the gas station with us. If she was strong enough to go into the store at the gas station...she would often have to lie down on the floor inside-to bring her heart rate back up....so that she could manage to walk back to the car! This caused quite a disturbance everywhere we went....but we did not care---I luckily had learned and passed along to my kids a lesson I wish more people would learn....Clean your house for your family/use manners with your loved ones....don't reserve the best of you for people you don't know and make no difference in your life....use the best for those who matter. So the stares of strangers did not matter very much!

For 2 years we struggled with the med's until finally finding an over the counter drug which kept her standing up for the most part. But it was very limited windows of time that this worked throughout each day. However, she was able to home school sort of and graduate and go on to college locally. Her younger sister was a HUGE help to all of us during this time. She drove her around- helped her get to classes when needed-and was a rock of support to her sister. For the first time-they were a team and not rivals. It was a great turning point in their relationship. (God always has a reason doesn't he? grin).

After the Growing Years Part 2

2010-03-16T15:03:00.001-04:00

(Read the After the Growing Years Intro- first- if you have not already done so....so that this makes sense.)

In late May of 1996, my daughter reached the height of 5'3. She was only weeks away from her 16th birthday and had been looking forward to being off of growth hormone shots for almost 11 years. The doctor said---"your bones are almost completely closed and you can stop taking growth hormone now or go a little bit more...it is up to you."

HUGE GRIN! Needless to say- she JUMPED at the chance to stop the shots. It was a HUGE day of joy and celebration for the entire family! Finally....FINALLY we were finished with the nightly battles to take a shot...the huge costs...and the numerous trips to doctor. She was full grown and healthy! YAY!!!!!

The medical treatments were successful. No she was not a huge person, we were only hoping for "normal". Nor was she a super athlete (I do NOT support the abuse of this med- AT ALL!) Rather, she was an honor roll student, beautiful (had boys jumping all around her), and most importantly she was healthy! As a junior in high school she was on her way to a full scholarship at the Air Force Academy because it was her dream to be a US Air Force officer and jet pilot.

After school was out for the summer, we took a trip to France for 2 weeks in celebration. It was a great trip but she developed a weird rash that looked like little spots of measels. The "spots" itched and scabbed over leaving scars....They seemed to go away and so we just ignored it and pressed on with life.

In July she began an Air Force ROTC boot camp of sorts. She loved it. There were classes, trips and physical training. She did great but noticed that she was feeling a bit tired and out of it. She began spending a great deal of her "down time" on the couch which was WAY out of character for her.

On July 23rd I took my youngest daughter and her best friend to The MAGIC Foundation's Annual Educational Convention in Chicago. The trip was great and the girls were so excited to be with all the families. We got in around 1:00 in the afternoon. At 9:30 pm I received a phone call saying that my oldest daughter (GHD) was being med-vac'd to a hospital with suspected liver failure. I couldn't get a flight out that night and it was a HORRIBLE night of panic and worry. The next morning we were all 3, on the 6:00 a.m. flight back home where we would then begin our 2 hour drive to the hospital.

I raced everywhere. Where was she? Would she be alive when I got there? Cell phones were not allowed- so I could not reach my husband...and I was just sick to my stomach with panic. Finally-Elaine and I got to the hospital and truly jogged everywhere to get to Missy's room ASAP. When we got there....she was drinking a milk shake and laughing!

I was confused! Is she ok? She has tubes and wires all over her head, chest and both arms but she doesn't look like she is on her death bed.... I gave her a huge hug and just said....ok give me the update.

Growth Hormone Deficiency-After the Growing Years Intro

2010-03-16T14:09:00.000-04:00

Well after good intentions of starting this blog YEARS ago....life got in the way....2 kids got married....4 grandkids....just stuff! But now- I finally am going to make an honest effort to stay on top of this.
Why?
Well... for the past few weeks I have been getting frequent calls from Moms all over the country with the same or very similar problems....Their now grown child...who was on growth hormone therapy as a child...is now experiencing more medical issues and they need help.

Why are they calling me?

My name is Jamie Harvey and I am a co-founder of a children's charity called The MAGIC Foundation. (http://www.magicfoundation.org/). My daughter was one of the first on the bio-identical growth hormone (not a generic) from 1986-1997 (she started at age 5 and stopped at age 16). (You can read about the early days in the post from 2007 archives on this BLOG.)

Over these many years, people have heard me talk (or read my early story online) about problems in this journey of medical "new-ness". And because there is so very little information "out there"- desperate parents are tracking me down for answers.

I need to make it clear that I am not a medical professional of any sort. I am just a mom (and now a grand-mom...lovin it!) who has been at this a long...LONG time. I decided to put all of this together so that families have some information to consider during their quest for answers.

This process will take a while...so just hang in there with me!

In the early days....when we finally got my daughter diagnosed as being growth hormone deficient and on medical treatments as a child...things were great and we thought that was the end of the problem....unfortunately it was not. Growth hormone deficiency can last a lifetime and we did not know that....way back when....and we found out the hard way! It took 12 long, agonizing years to learn about the issue of growth hormone after the growing years.

And because I know this can be boring...I am going to tell you WHY this is important ...

During the 12 years (after my daughter stopped her GH treatments)...she:

1. Developed an irregular heart beat
2. Gained lots of weight
3. Went on anti-depression med's
4. Struggled to get out of bed regularly
5. Began to have a thinning of her hair
6. Was diagnosed with Hashimoto's thyroiditis (hard to control thyroid)
7. And she began to loose her vision! Meaning she was getting close to legally blind WITH glasses on.

I will go into these issues and more in the upcoming days....

Labels: magic foundation;growth hormone deficiency

The truth about Growth Hormone Deficiency in Children

2007-01-23T01:48:00.004-05:00

After reading about this issue, and being personally involved for over 21 years I wanted to have a place for honest communication for parents. As you will notice, I am not a proficient writer but I do write from experience and with high hopes that this little blog can help people suffering.

I have read the good, the bad and the very biased information about growth hormone use for children for many years. I am a mother whose child was one of the first children to ever use the "new" growth hormone medicine. It was an agonizing decision.

My interest was not focused on getting my daughter taller, even though that was nature's little alert signal telling me something was wrong, rather I was more worried about her life. I wanted her heart to be strong, her lungs to work well and her bones to hold up throughout her lifetime. Today she is healthy, no longer on the medicine- and has given me 2 healthy grandsons (ages 2 and 1- oh they are cute!!!!) (Revison on Jan. 2011- she is now back on GH- so parents be aware!)

I have been around a while and experienced many issues with her. So if you have a question, comment or concern-feel free to shout.

Details of some of my experience with this-is provided next. Post your comments and questions so that everyone can learn. Thanks!

June 4th- one of the happiest days in my life. The birth of my first child, Missy. As the pediatrician checked her over and all was "A-OK", I joyfully and sincerely said my prayers of thanks. For the next 18 months her father and I watched over every move she made and marveled at every silly thing. We just knew our child was the best child in the entire world! She was given one hundred percent of our attention and every toy imaginable, including toys from supermarket aisles.

I admit it, she was spoiled rotten...until December 29th of the following year. Our second daughter Elaine was born. The reality of having two perfect children exhausted our head sizes even further and put a fast reality check on our spoil the child bank account!

As the girls began growing up I naturally (despite my best efforts not to) started comparing the two. When Missy was 3 years old, Elaine was almost as tall as her "big" sister. I mentioned my concern to the girl's pediatrician. He said, "Don't worry…"

Two years later Missy had not improved. I had gotten tired of the don't worry be happy scenario. Elaine was now the same size as Missy. I was beginning to panic. The pediatrician now said I was being hysterical and over anxious, and not to bother him about such concerns! Well this poor man paid for his lack of experience and tact as I unleashed a truly panicked mother's verbal rage.

The nurse took me aside. She told me to come in without an appointment on the same date each month for several months, simply to measure my daughter. And laying her job on the line, said she would give me the referral I needed to see a specialist if the measurements showed that Missy wasn't growing normally. (Long story –military nurse outranked doctor).

Anyway, six months later, Missy was referred to a Pediatric Endocrinologist. My mothers instincts were … unfortunately …right! The specialist examined her thoroughly, and took a complete medical history of both my husband's family and mine. After a battery of tests and more than 4 weeks time, we had a diagnosis. She had a pituitary disorder causing her to be deficient in both thyroid and growth hormones.

Great! I thought, let's get the pills and get started! You see I too had not grown normally… thyroid pills "fixed me" and I was anxious to "fix" her. Boy was I WRONG! What was facing us now was terrifying. She did need thyroid pills but growth hormone was new (this was many years ago) and required regular injections. The doctor explained that the long term effects of this "new" medicine were not known (at the time). She could go without growth hormone and be perfectly proportioned but stand only about 4 feet 2 inches tall as an adult. My husband and I were terrified. Short ok...but heart, lungs, bones...what was going on? What do we do? Experimental, shots, unknowns, only opportunity...the urgency and the unknown were literally taking our breath away. The pediatric endocrinologist suggested that we go home, discuss it thoroughly, and get back to her with our decision.

So we packed up the kids, put on our brave faces and headed home. The 45 minute drive seemed to last for hours. We tried to be happy with the kids, singing and playing games to keep them busy. Occasionally my husband and my eyes would meet but we quickly looked away fearing that we would loose control and break into tears. The decision was a tough one and we could not make it alone. Lesson #1- you are never too old to call Mom and Dad!

We love our daughters, they are our life. To have Missy healthy at the height of 4 feet 2 as opposed to the uncertain possibilities was strongly considered. Yet to pre-determine her future, to live her entire life the size of a child was an aspect we had to seriously consider. More importantly to us were the other (the real deal) aspects which growth hormone affects; her heart size and strength, her lung development and strength, her bone strength, immune system function, and much more....we had a lot to learn, very fast.

I called my father who was a hospital director with access to people and inside knowledge. It was a serious call, and a serious decision. His first born grandchild's life was in the balance. He and my mom tackled the job with the fierceness of a protective lion. After several weeks of agonizing waiting, my father finally called. He said, (and this is verbatium because I will never forget his exact words), "It's safe. I can’t tell you what to do but if it were me I would go ahead with the treatments." He relayed all of the information he had gathered piece by piece. I knew that this very protective grandfather would never make such a definitive statement without complete faith. My husband and I talked some more...and then we called the doctor. We were going ahead with the growth hormone treatments. We made an appointment for the next day, to learn how to give her the shots.

The evening before "lesson day" was horrible. We sat down with both girls, one kid for mom's lap and one for dad's lap. We explained the situation as best we could in 5 year old language. We were surprised that Missy did not act concerned. Later, we tucked the girls in for the night, and then sat side by side holding hands in silence on the couch for hours.

There were no words left to say, only tears. My thoughts raced...I will be brave. I have to be strong so that Missy will not be afraid. Oh God, please help me make it through this! Please let this decision be the best one for her...How is she going to react? Is she going to hate us? Can I actually push that needle into her tiny little leg? My mind was racing out of control. All I could do was hang on and keep going...cook, clean, clean, clean,clean and clean some more-anything distracting. My house looked great, I looked a mess!

Lesson Day- June 9th. My husband’s 28th Birthday! The activities helped distract Missy. Yet, every smile on her little round face brought doubt in our hearts...would she be the same sweet child after all of this started? What if our decision is the wrong choice? What if this stuff hurts her instead of helping her? I kept telling myslef to trust my faith. We were put in this extraordinary doctors hands for a reason...trust my guidance. But oh it was so hard at this point! We dressed the girls for the doctor's office and began what seemed to be the shortest ride back to the hospital.

I DON'T WANT TO BE HERE, I thought, as we pulled into the hospital parking lot. But being the adult, I composed my nerves, gathered Missy in my arms went to the office. Dad gathered up Elaine, and put his arm around my shoulder playing with Missy's arm which was clinging to me. My throat ached with a fierce gripping sensation. Trembling hands signed my daughters name on the waiting list, as I nervously tried to smile.

She jumped a little each time a name was called out, but quickly returned to play when she heard an unknown name. After about 10 minutes we heard....MISSY, the nurse's voice echoed...I looked at my husband. I was quietly taking deep breaths to try and keep control and he noticed. I remained with Elaine in the waiting room because as the nurse put it- we don't need to scare her too and mom looks like she needs to stay out here. Thank you Lord, I have the role of the ostrich! Without a word my husband Jim gathered her up in his arms, kissed her cheek, and headed down the hall.
About 30 minutes later, the love of my life reappeared. His face was pure / see thru white with Missy in his arms. She was smiling. She thought it was all over. Poor Dad was trying to keep his “public” composure as he had just given his baby her first shot with a nurse evaluating his skills. On the drive home he gathered his strength back and praised her. He tried to explain it would happen again- but she mentally ignored and blocked it....we just let her! So much easier at this point!

The next evening I picked her up and said, "OK baby, now it's time to get your shot". This is when reality struck her with a vengeance.

My husband took the "stuff" required to do an injection into the bathroom. When faced with the reality and the inevitable, she began manically kicking and screaming like a wild child. I had never seen anything this fierce from her or any other child ever before. We had to enclose her in the bathroom just to try and contain her. I stood in the hall leaning on the closed bathroom door with tears flooding my face. I gripped my mouth with both hands HARD to hide my own gasping sounds as I heard my baby yell and beg her father to love her...pleeeeeease don't daddy...I'll be a good girl..I'll be your bestest girl......I PROOOOMISE! Screams, wrestling around sounds, more begging ... it seemed like forever....then silence....

I heard the door unlock and I scrambled to my feet and away from the door. My husband appeared. He was pale, shaking, and holding her in his arms. And without words, he handed her to me and walked quickly to our bedroom closing the door behind him. Her face was soaking wet, hair drenched, arms sweaty, and just upset as she could be. So for the next half hour to hour, (mistake #1) I held her, rocked her and tried to assure her of our love and explain our motives.

Just FYI- The old style of injection (1985) was indeed a painful one. A large needle was used. We had to push the needle all of the way, sometimes hitting the bone and pull it back to make sure it was in her muscle. (Today they use small insulin needles and the pain is minor. Unfortunately, as one of the "first" children to benefit from modern medicine, she was also one who taught lessons for future children to benefit from. A sad but necessary part of safe medicine.)

Missy continued her fight each shot night for 18 long months. She finally got to the point where she would tolerate her dad doing the shot (after a lesser battle) but not me. My job was to console her. We had to explain to all of the neighbors that the blood curdling screams at 8:00 p.m. ..... meant shot time.

But then came the day when dad (he was in the military) had to leave for three months. I had been dreading this, it was now my turn...alone. Missy was quiet all day. I thought it was because she was sad about her daddy leaving. I was right, but there was so much more going on in that head of hers! That evening I prepared the syringe and her silent plan came into full bloom. I went into the living room where she was watching television. She ran. I pulled her out from underneath the bed...she ran again and again. She was fighting me with the panic and furry of a drowning child. She was hitting, biting, clawing, and punching me in the face. I couldn't let go of my hands to give her the shot without her escaping. So I just held on, and it literally took all of my strength to do so and I was not a weak person.

I held on to this squirming child for 45 minutes as we had been trying to do what everyone told us to do...and that was...patience and undertanding-with firmness and consistency (mistake #2). But after being abused for almost an hour I got mad and popped her rear end. As this was not a common occurrence for her, I got her attention ...quickly! She immediately halted the fight. We were both dripping wet and exhausted. She relaxed her muscle just enough for me to safely give her the shot. Afterwards, we talked for a long time. We came to an understanding, and we both grew up a little that night.

The battles were finally over. From that night forward, she did her best to tolerate the injections with only a few occasional whimpers. No more running and hiding. A few weeks later, we got a BIG blessing-we began using the small insulin needles. Months later, Jim finally returned home. He was shocked at her progress. I don't know who was more proud, Missy or her daddy. The smiles were genuine and frequent. But wait...she had one more trick up her sleeve. Two weeks after daddy's arrival it was Mother's Day. Again she was quiet all day long. I thought, "Oh no what is going on her head now?"

Elaine colored mountains of pictures for me all day long. I bet she colored 3 dozen pictures of me. Jim took us all out for dinner. When we got home it was time to get ready for bed and that meant time to do the shot. Missy quietly came to me in the kitchen. She looked up at me with nervous innocence, and big round eyes special only to a child. She said, "Happy Mother's Day Mommie! ....for your present I'm going to do my shot all by myself", and she produced a prepared needle from behind her back. I never believed, not for a second that she could do this. But "going along with it" I followed her to the family room. She sat down on the floor where she had other things already lined up and prepared. She was visibly trembling. Slowly she began to wipe her leg with an alcohol pad. She wiped and she wiped and she wiped some more. It was the cleanest injection site in the world! Then she picked up the syringe and made sure her fingers were holding it just right. She held it over her leg for a minute and then closed her eyes tight. Her bottom lip was sucked in so hard that it was invisible. Her tiny hand was shaking...Then she opened her eyes, and thrust the needle in her thigh. She whimpered slightly as she pulled the needle out. Then she looked up at me , "Happy Mommie's Day" she yelled with the BIGGEST toothless grin from ear to ear.

I cried and cried and then cried some more. Mother's Day 1988, I was given the gift of sacrificial love from the tiniest of sources...my baby girl.

Since this experience, my life took not just one but two more dramatic turns. And due to these events the Lord and I have had some loud conversations. Some of which I am terribly ashamed of!

You see my baby daughter Elaine, broke her arm about 2 months after Missy gave me my amazing Mother's Day gift. Apparently, it was not an ordinary broken arm. As a matter of fact it looked so bad that the young X-ray technician thought we had been abusing her by breaking her arm hundreds of times! We were questioned and threatened by military "experts" regarding possible child abuse because the bones looked so horrible. But knowing that we are push over parents, we knew something was terribly wrong. After many conversations, guarantees from my husbands CO that we were ok people and not abusers- we were released from the military hospital but warned to come back on Monday for follow up (this was Friday). Hearing the "review" of child abuse and distorted bones, we knew they did not know what was going on with her and left the hospital and drove directly to Children's Hospital.

After hours and hours and many people looking at her and the x-rays, the ER staff called in the Chief of Orthopedics at 4:30 a.m.! He examined her, looked at her x-rays and left. After about 45 minutes he returned and told us that she had a rare condition called McCune-Albright Syndrome. Among other things it causes a bone deterioration (to put it simply). Finally, someone had answers! Now what?

No treatments. No cures. Yes it does continue to affect more bones etc., etc. The words were so horrible I began blocking their entrance into my brain. What do you mean there is nothing ....nothing that can be done? This is not in my personal being...nothing....call Mom and Dad...they will know.

The more I serached for answers, the worse the news - nothing could be done. How exactly do you tell a mother to just sit and watch their child deteriorate? God, I hope you offer a special place in heaven for Mom's who help their children pass or face challenges in life which us mere spoiled healthy people can only fear.

There is always a reason and a path in life. And so if something was lucky about Missy having her problem, it was this... I had met some incredible Mom's with kid's like mine. I networked with hundreds or even thousands of families and physicians from throughout the country. So when we got this horrible news, I immediately picked up the phone to call my friend Mary. She gave me the name of a nurse in Virginia, who gave me the name of another nurse at the National Institutes of Health, who knew of only 18 cases in the country, and gave me the name and number of a mom with a daughter like mine. Only 18 known cases and I found the connection within 3 hours.

My next call was to that mom in Ohio. She waited patiently as I sobbed and literally talked me through my pain and fear. She truly saved my sanity! There were many battles because Elaine wanted to learn how to ride a bike, roller skate and do all the things that kids with "normal" bones can do. I tried to stop her. She snuck around and did them all anyway. UGH!!! As it turned out, we were blessed, it appeared that Elaine was only mildly affected with the syndrome. Her symptoms were only slowly progressive. We found out why... later.

Five years after her diagnosis, she had gotten up three times to go the bathroom and before midnight. By this time in my daughter's lives I had become an intensely observant mother. So, not taking anything for granted, I took her to the pediatrician the next day. I thought she might have a bladder infection. The pediatrician literally took one look at her, smelled her breath and said she wanted to do some lab work. I thought nothing of it as they have to do labs to confirm a bladded infection. But then the pediatrician said "come with me" and she personally walked us to the lab! This was not normal I thought! But I didn't say a word as she stood there while we all waited for the results. She looked at the paperwork and said "let's go back to my office". I just obediantly followed her, thinking that it may be something about the MAS bone issue. When we arrived at her office she asked us to sit down and said, "Elaine has diabetes."
Elaine didn't know what diabetes was. But upon hearing the words I gasped. Elaine looked at me and saw tears streaming down my face. This little baby all of ten years of age, put her tiny arm on my back and began patting me, trying to console me! Then she quietly asked, "am I going to die?" I could only hug her and say "no baby, you are going to be alright". The doctor then asked that I call my husband from work so that she could talk with us together. (My husband and I surmized, years later, that the developing diabetes may have somehow stunted the progression of the bone disease but we don't know for sure because there is only one other case like hers that I have ever heard of...and have never been able to speak with that family.)

Elaine did not experience the terror and shame most children going through similar problems experience. Due to the fast networking of other children "just like me" I was able to help her feel normal despite her multiple challenges, thanks to my work with The MAGIC Foundation.

Over the years a few people have commented to me; why I seem to give so many details about Missy's medical problems and skip over many details about Elaine. I was bothered by this. And in thinking about it I realized that due to the intense emotional overload of having not one but two affected children, one of which is life threatening, I can only deal with so much. And the more serious the problem, the more I tend to internalize. Eventually, I will reach out for help.

Each time I had called Mary at MAGIC. And each time I found exactly what I needed to help my children. Today, Missy stands 5'3" tall. She is beautiful, intelligent, and will never experience the medical complications associated with her disorder. Elaine is equally as beautiful and intelligent. She has a fighter's independent spirit, and an I can do anything attitude. Many people have commented on what a good job her father and I have done in raising two physically challenged, yet emotionally stable children. In all honesty, we were just really blessed.

We could not have done it without our parents, each other, a great deal of faith nor without the support of the entire MAGIC family. I personally, could not have made it without Mary Andrews. There is nothing, absolutely nothing more comforting than another parent who can say those words from experience...everything will be ok. It feels as real and as reassuring as the big bear hugs our parents gave us when we were children. And now that medical technology has once again pushed forward, the important role of growth hormone in the adult body is being recognized, and addresses. We are all in this together. And since the issues are "rare", if we don't band together, there will be no one for those who follow.

This is the point of my establishing this blog.