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Thursday, March 25, 2010

Poor Old Guy

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 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!

Wednesday, March 24, 2010

My Mosquito Man

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 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 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

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 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 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; !

After the Growing Years Part 6

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 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!

Monday, March 22, 2010

After the growing Years Part 5

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 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 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 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 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 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 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 was terrifying as she just got worse and worse each week. Then my phone rang and it was my dad....

Friday, March 19, 2010

After the Growing Years Part 4

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 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 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.

Thursday, March 18, 2010

After the Growing Years Part 3

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 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 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 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 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).

Tuesday, March 16, 2010

After the Growing Years Part 2

(Read the After the Growing Years Intro- first- if you have not already done 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 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

Well after good intentions of starting this blog YEARS 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.
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 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. ( 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 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