Growth issues in children (frustrating UPDATE on page 2)

[SillyMe]

Prayers for your niece, you and your family PAW.

 

[momof2inPA]

Maybe they want to test her for allegies to lots of foods in addition to the celiacs. They usually take about 3 viles for my kids' food allergy tests.

If your niece does end up having celiacs, let me know. I'll send you the best cookie mixes-- they make really good cookies. Let us know how she's doing.

My kids have multiple food allergies and are quite tiny. I do think the dietary limitations have restricted their growth-- but they're cute!

 

[The Mystery Machine]

I read what you wrote yesterday but I have to say I am still a bit concerned about the rash and extremity swelling.

Yes, that has me worried too. I hope you get resolution!!!

 

[Sandcass]

Lots of prayers, love and pixie dust for your sweet little niece. And prayers that the doctors can find the right answers!

 

[Kitty 34]

Keeping your neice in my thoughts and prayers, Wendy.

 

[AnnR]

Bet and jennyl772003 I think you should check out www.magicfoundation.org if you haven't already. It is an organization for growth hormone deficient people. It used to be soley for children but they have added growth hormone deficient adults (like me) to it. They have a convention in July for the kids and it is wonderful.

Wendy,
I sympathize with you. I have a niece that we are testing for the opposite problem, she is way too heavy for her age without eating that much.

I would have your nieces hormones checked. There are problems with the pituitary gland that can cause this. She should go to a pediatric endocrinologist. I speak from experience, I was small and sickly as a child and was finally diagnosed with a cyst on my pituitary gland. I also don't mean to scare you. There have been great strides in treating this now. I just want to make sure her parents keep looking and don't take any doctors word as absolute. My parents regret that they listened to my pediatrition
who told them I was anorexic. Even though I knew I was too thin (4'9 and 65 lbs) and tried to eat. I was nauseous all of the time and couldn't keep food down by the time they found it.

 

[N.Bailey]

I typed this out to post the other day and everytime I tried to submit it, I'd be knocked offline. I don't know what's up with Adelphia, but it's getting frustrating!!! Anyway, I don't know if this will help or not.

My son has always been tiny too. I think he fell in the 2 percentile range. When he was younger, our pediatrician thought he might lack a growth hormone, so they decided to run some tests. The testing was exhausting to say the least. 1st, we went to the office where they drew blood. After that, I had to take him out into the parking lot and run with him for either 30 minutes or an hour, I can't remember. I was not allowed to let him slow down at all and his heart rate really had to get beating pretty fast. Once that time was up, we went back in and they drew blood right away. Then we had to stay around for another 30 minutesto an hour and he had to be as still as possible during that time. After which, they drew blood for a 3rd time.

I guess there is a much more accurate test they can run, but it's VERY expensive. How expensive, I have no idea. The pediatrician just emphasized VERY EXPENSIVE.

It turned out that the tests were not conclusive. In the end, they decided they were just going to watch his growth very closely and if he did not grow at least an inch per year, they were going to have that testing done.

While my son never grew much, he did at least grow that 1 inch each year. If he lacked the hormone, they would have treated him with steroids.

This was probably 10 or so years ago, so maybe things have changed a bit in that time.

Best Wishes your way

 

[The Mystery Machine]

While my son never grew much, he did at least grow that 1 inch each year. If he lacked the hormone, they would have treated him with steroids.

It is important to find out why. There could be tumor (or something) on the pituatary gland or growth hormone deficiency.
The minimum is 2 inches a year but also the curve has to "flat-line". It really isn't so much as to "how much" as to "how".
Also it includes weight and in fact my dd is unable to gain without the hormone. I know that sounds very odd to people, but the people forget that the pitutary gland is also for weight gain as well as height.
It is difficult for people to understand, when I tell them I give my dd synthetic hormone. It is not a steroid.

EX. I just took dd to her appt., she has to go every 3 months, and she has been doing very very well for 3 years. She has been growing normally on the growth hormone.
Last time they changed her dosage which required a 2 shots in a evening instead of one. That didn't go over too well, coupled with the fact she had missed for 2 weeks due to circumstances with holidays and illness. Normally she never misses, even when she is sick.
Her weight gain went flat lined.
So now we have to fix what we have been doing and hope that things go back to normal.
I have confidence they will.

But to Pooh and Wendy...I have a dd that also has a repaired heart defect. I would go get an Echocardiogram first thing. Small and sickly coupled with no weight gain could be heart related. Esp. since she has edema. That is unnerving.
I would hope that it was the first thing that was done. Remember only trained ears can hear things. I know that from experience.

 

[phillybeth]

I would go get an Echocardiogram first thing. Small and sickly coupled with no weight gain could be heart related. Esp. since she has edema. That is unnerving.

that was my first thought as well. I have had two younger family members with congenital heart defects (both diagnosed at birth). One has had multiple surgeries since she was a few days old, but the other had to wait until school age to have his surgically repaired, and he was much as you describe- small, sickly, underweight.

 

[poohandwendy]

Thank you all for your suggestions, experiences and well wishes. I agree that checking her heart is a great idea. At this point, no, they have not done an echocardiogram. I have mentioned it to my sister. Also, I think she mentioned that they were checking her thyroid too.

I guess wejust have to wait until they check the results of the tests they are running now and go from there. I do have to say, I hate waiting.

 

[The Mystery Machine]

Thank you all for your suggestions, experiences and well wishes. I agree that checking her heart is a great idea. At this point, no, they have not done an echocardiogram. I have mentioned it to my sister. Also, I think she mentioned that they were checking her thyroid too.

I guess wejust have to wait until they check the results of the tests they are running now and go from there. I do have to say, I hate waiting.

I am sure she is under great care, I am not there so I don't know the situation, of course. It is just hard for me to think why wasn't this the first thing that was done, when she had swelling???
Anytime there is swelling you always check the heart. I don't get it.