Children with growth issues?

[MareQ]

Posted this on the CB - figured this would probably be a better place so am posting this here as well.

We are starting up the search - again - to try and find out why my son is so small. At 9.5 he weighs 37 lbs and is approx 45" tall.

I have been to two different endocrinologists with two different hospitals. I took a break for a year for many reasons and now we're going back again.
We've done every test except a growth study for some reason - ironically enough they kept finding other "possible" causes and kept running with that. I am going to put teh heat on and demand one this time.

What happens with a growth study? What happend if he needs growth hormones?


I am just being tired of feeling like I am being passed around liek a hot potato. It just seems like nobody is following through. They find something odd on a test and shuffle us off to a different specialist. I wasted 2 years on thinking he had Celiac Disease - nope. One endo passed us off to a Hematologist because he is chronically anemic.... NO answers there either.

Does anybody else have any similiar experiences they can share with me?

ETA: Regarding bold - since you all will understand. I took a break from Doctors for awhile because my son was on total overload. At one point he was under the care of a:
Pediatric Dentist(horrible teeth)
Pediatrician
Pediatric Endocrinologist
Pediatric Gasterenterologist(for suspected Celiac Disease)
Pediatric Hematologist
Was undergoing Genetic testing(found nothing)

He SCREAMED in a restaurant when a guy in a white unbuttoned and untucked shirt walked past our table because he thought he was a Doctor coming for him - decided then and there that since we were going nowhere - we just needed to sit back awhile and treat what we could. We continued with his teeth, continued with PT, OT, ST and resource room at school and let him just be a kid for a bit. (Low muscle tone, SID, Apraxia of Speech also has LD)

Obviously I have to get back on the saddle and try again to battle this growth issue - I could just use some support I guess I feel like every decision I make is the wrong one.

 

[ALWEASEL]

Hello.
I can understand everything your going through.
I was on growth hormone and still have medical issues from it.

How small is he for his age?
That does make a difference with doctors.
If you really think its bad i would find an endo that will give him a growth test.
Now i will tell you its not a pleasent experiance.
I had one about 7-8 years ago because they are thinking that even adults that were on growth hormone might still need to be on it.

My mom and dad went through the same issues.
Is there a reason he is small?
Like head tumors and head trauma and such?

If he needs growth hormone it is a shot you will need to give him depending on his age. He will probably have to learn how to do it when he gets older.
Also depending on why he is short you may need other medications.
None of my Hormones really work, So i take meds that replace them.

I have a website for you that will help.
Dont be afraid to ask them for help, They have all gone through the same problem.
The web address is http://www.magicfoundation.org

I hope its a big help.
If he does need growth hormone they will also help you find good doctors and such. Also they have a convention every year so he can meet people with the same issues and maybe not feel so alone.

That could be a problem for him now and in the future.
I also had the same problem.
It's tough being the only kid in school that short.

I hope this helps if you need anything just yell.
Thanks
Alweasel

 

[Goofyluver]

It sounds like you are speaking about my DS. He has many of the same medical issues as your DS. Jon has agenesis of the rostrum of the corpus callosum, static encephalopaghy, gross motor delays, fine motor delays, speech and language delays, hypotonia, sensory integration dysfunction, cognitive delays, orthopedic issues for which he wears bilateral AFOs, severe asthma and allergies, depressed immunological system, and NOW...growth hormone indeficiency. Docs have also stated that he probably lies somewhere on the spectrum. It's tough...I know!

We had a growth study last week on Wednesday. He has been followed by the endo for about 4 years. He is 11 1/2 and is 50 inches.

The growth study was not horrible, but was definitely not fun either.

We are just in the beginning stages of growth hormones, but before prescribing the hormones, we had to have the growth study.

They hooked Jon up to an IV, and administered pituitary and adrenal stimulating drugs through the IV. They drew blood through the IV every 20-30 minutes for 4 1/2 hours. The yucky part was that the meds made him throwup. But, it passed fairly quickly.

IVs and pokes bother him none...so that wasn't bad for him.

The docs believe that Jon's neurologic abnormality has created a sort of disconnect between the pituitary and the body...so no hormones are reaching his body. He is not on the growth charts any longer, and fell off of his curve over the past 2 years or so.

We are returning to the geneticist and his neurologist in order to get a new MRI to look closely at his brain to determine if his abnormality is in fact the "issue" with growth, and in order to determine if he has some type of genetic disorder which will relate all of his medical issues.

Growth hormones, which he is a candidate for, will be $40-50 thousand per year. We are in the beginning stages of getting insurance approval.

What many don't understand, is that growth hormones do not only contribute to stature, but also to physiological development. Our bodies will not "develop" correctly without the hormones.

This is new for us too. We're just beginning with this process. I'm glad someone else knows what I'm going through.

The endo asked Jon if he minded being the shortest one in his grade. Jon said: "Nope, because my mom says what's different about us makes us special and it doesn't matter how tall you are."

Good luck on your journey. Maybe we can learn about all of this together!

 

[6gr8kidz]

You may want to see a rheumatologist. My daughter is 8 and wears size 5t clothes. She weighs about 38 puonds. I always questioned her pediatrician about her size and I was always told that my daughter is a pip squeak like me. ( I am short)

Turns out she has Juvenile Rheumatoid Arthritis. Seems as if the body is in a chronic state in inflammation it does not grow properly.

Just a thought.

 

[6TimeMomma]

I always worry about my daughter Destiny. She is 10 1/2 and is 50 pounds and 50 inches tall. She still wears 7/8 clothes and her sister (almost 8) is almost caught up to her in height.

My other kids have been on the small side, but she really is small. I always wonder whether she should have some futher testing, but so far her ped hasn't suggested the need for it.

 

[Tissa]

My ds was always small, now at 12 he is 73 pounds and 54 inches and wears a size 8 pants. The dr doesn't seem to worry too much about it, he has CP and wears an AFO. I'm not too concerned about it yet but will keep up with this thread to see how others are doing.

 

[proudmomof4]

I am just being tired of feeling like I am being passed around liek a hot potato. It just seems like nobody is following through. They find something odd on a test and shuffle us off to a different specialist. I wasted 2 years on thinking he had Celiac Disease - nope. One endo passed us off to a Hematologist because he is chronically anemic.... NO answers there either.

Does anybody else have any similiar experiences they can share with me?

ETA: Regarding bold - since you all will understand. I took a break from Doctors for awhile because my son was on total overload. At one point he was under the care of a:
Pediatric Dentist(horrible teeth)
Pediatrician
Pediatric Endocrinologist
Pediatric Gasterenterologist(for suspected Celiac Disease)
Pediatric Hematologist
Was undergoing Genetic testing(found nothing)

I can SO relate to this.......my DS is a little older and bigger than your son but he has always been the smallest in his grade and people are always making comments about how tiny he is. The pediatrician always just said he is on his own curve and as long as he is proportionate not to worry.

At the age of 5 he started running very high fevers every 3 weeks for over a year but they could never find a cause for them. We were sent to an infectious disease doctor who proceeded to test him for various different blood disorders and immunology testing and found nothing. All they could tell me was that a lot of the immune system was still a mystery and to try to minimize his exposure to other kids.

A few years ago I finally took him to an Allergist, he is allergic to just about everything airborne and has been receiving allergy shots for the past 2 1/2 years and has improved.

About a year and a half ago, he was complaining of severe nausea and occasional vomiting every few days, we went back to the pediatrician again and I asked why he is still so small and she finally admitted that he wasn't even on the growth curve and decided to test him for a few things. He came back positive for Celiac and H-Pylori so we were sent to a Gastroenterologist.

The gastro doc did an upper GI and ruled out Celiac and H-Pylori but said he had duodenitis, so he was put on meds for 6 months and then declared cured.

We have also seen an endo who claimed all looked fine and maybe he was just meant to be small. At his physical this summer the pediatrician said he is still under the curve but at this point we are just fed up and are waiting to see what puberty will do to.

Good luck to you, I know how frustrating all this can be

 

[AFL]

My son celebrated his 15th birthday on Sunday, Oct 14. He is 58 3/4 inches tall and 72 lbs. He was almost 3 before before he tripled his birth weight. I can tell you that he was doing good up til he was 7 months old - gaining about a pound a month, then for some reason he stopped growing. He has never had a growth spurt.

Other than being tiny, there is nothing medically wrong with him. He's a highland dancer, has a job, is outgoing, self confident and personable.

Genetic blood tests were done for dwarfisms - all negative. We were sent to a pediatrician when he was 3. The doctor looked at me (I'm 4'9") and my hubby (5'7") and said that we would never have a football player or a basketball star and not to worry about it. We NEVER have. Some people are just made to be small.

AFL

 

[whgrn]

Has he always been small? My DS (10) was a 32 week preeemie, birth weight 3.15 and at 18 months he weighed 18 pounds and was 28 inches tall. He has never budged from the 3-5th %ile on the growth charts. At 10.9 yo, he weighs 52 pounds and is 52 inches, size 6-7 slim, shoe size 1.5 and he's the smallest boy in his class. He is in 5th grade and is often mistaken for a 2nd grader. As you can imagine, he is NOT happy about it! BUT, I checked a growth chart, and if he continues to follow the curve at the 3-5th %ile, at age 20 he will be 5'6", which is about what his father is!

We've had him tested regarding allergies, nutritional stuff, hormone levels, you name it. He did have some cortisol issues for awhile, but nothing definitive. As a PP said, some kids are just meant to be small.

 

[AnnR]

PLEASE check out the following organizations. They are very helpful

www.magicfoundation.org

www.pituitary.org

BTW I have panhypopituitarism