Does anyone have a child with endocrine problems?

[luvmarypoppins]

My one ds goes to a pediatric endocronologist. I think all of his problems stemmed from being on advair for his asthma for too long. Both his immunologist and the endrocronologist disagree with me, but I dont care, we pulled him off the med. I read the insert and there is not enough conclusive tests and data on kids his age for me to be happy with the meds. The endocronologist has done like 14 tests through 3 vials of drawn blood. and ruled out 2 disease. I have not taken him for a followup but I need to and I have to get l more x ray. His bones are not growing fast enough as his body, very bad. She is thinking of giving him hormone shots. I told her I also dont want him to have growth hormone. Another child we knew went to the same hosp. and had the growth hormone shots and ended up needing a liver transplant. You are your childs strongest advocate, stay on top of things and ask any question you want etc. Best of luck.

 

[Caradana]

The synthetic growth hormone is one of the greater innovations of modern endocrinology. The shots are a small price to pay for a lifetime of "normalcy" - think of it like diabetes, it's a "condition to manage," nothing to avoid or be apprehensive about. This isn't just a cosmetic concern - it's about proper growth of a developing body. That being said, none of us want our kids to be at a disadvantage if we can avoid it.

 

[Caradana]

Also, luvmarypoppins - I'm not a doctor, but I remember seeing a few days ago that your sister died of Marfan's. There's a genetic trail in your family of mututions involving growth disorders. I might consider a visit to a geneticist for your son. Hope that helps.

 

[YourMajesty]

Have you ever tried giving him melatonin? I have been giving DD 2mg nightly before bed since last week...and I'm happy to report that she is OUT 30 minutes after taking the medicine. She was taking up to 2 hours to get to sleep at night.

Now granted, the medicine is gone 4 hours after she takes it...but it's 4 good hours of sleep each night.

No, but he ask me a couple of months ago if I could get him some lunestra (sp)....I guess he watches too much tv (he's 8). I could give the melatonin trial to see what happens. He's always been on the low end of "normal" amounts of sleep. When he was a newborn he took 6-7 20 minute naps a day...it drove me crazy. His issues at night seem to come and go but I know since school started (we are going on 6 months) he has been waking 4-5x per night, usually a couple of 2x in the first two of hours of sleep. He doesn't always have trouble falling alseep but wakes up confused and sweating...etc. Later in the night he might come in a sleep at the foot of our bed ( our younger DS gets the middle ) Does your DD make it for four hours now with the melatonin....and do you give her a second dose when she awakes?

I've been very interested in all the comments. I have read that children with sleep problems can have stunted growth because the growth hormone can't do it's job. I'm wondering if they get to the cause of the sleep problems and they can correct them...would a child still need the gorwth hormones. Just thinking out loud. Please keep us posted and

 

[In a hurry]

Re. acid reflux, I thought I was having anxiety attacks in the night. Turned out to be an emotional reaction to the tight feeling in my chest. Once I spent about a month on Nexium, the sensation went away, and what I thought was anxiety stopped.

I hope all works out!

 

[goofy4tink]

Re. acid reflux, I thought I was having anxiety attacks in the night. Turned out to be an emotional reaction to the tight feeling in my chest. Once I spent about a month on Nexium, the sensation went away, and what I thought was anxiety stopped.

I hope all works out!

Wow, my dd, 12, has a 'tightness' in her chest a lot at night! We've all told her she's just imagining it.....maybe not it seems. She has an incredible amount of trouble falling asleep every night. But, she's tall (5'3") and really thin (95 lbs), so growth is not an issue here. Last night, after trying to fall asleep for an hour or so, she came into my room and told me that she thinks she needs professional help now. Looks like a visit to the pedi again. I'm really curious about the whole 'tightness' thing though. I have thought she was just imagining it.

 

[The Mystery Machine]

Oh yea...Reflux.

My doc put me on muscle relaxers...duh...one day I took a prevacid and like magic it was gone.

Now I know what it is. Go to the gastro. I put it off for so long, just taking meds. I think I may have damage. I will find out next week!

 

[luvmarypoppins]

Also, luvmarypoppins - I'm not a doctor, but I remember seeing a few days ago that your sister died of Marfan's. There's a genetic trail in your family of mututions involving growth disorders. I might consider a visit to a geneticist for your son. Hope that helps.

Thanks, Been there and done that, actually went to one of the best at Cornell/NYU , Columbia Presbyterian. Yes, my family is a definetely a medical challenge. No one in my family has marfans because my sis had a spontaneous mutation but we do have lots of weird things going on. I always give each dr. a detailed description. The current ped. endocronologist seems pretty knowledgeable though. Now, I just have to get him back there.

 

[YourMajesty]

Oh yea...Reflux.

My doc put me on muscle relaxers...duh...one day I took a prevacid and like magic it was gone.

Now I know what it is. Go to the gastro. I put it off for so long, just taking meds. I think I may have damage. I will find out next week!

I hope you hear good news. I was very worried too before a recent scope. It seems I've had reflux since I was a kid. I treat it with OTC pepcid but switched to OTC prilosec with good success. I did not have any damage but I did find out a cause for the reflux. I have a hiatal hernia with cuases the lower esophageal spincter to remain open. It can be treated with surgery but in my case the meds seem to be doing damage control so no surgery for now. Good luck.

 

[Rafiki Rafiki Rafiki]

You guys about have me convinced that my daughter's reflux has caused the mess she's in.

Up until this year, she has just been too young to swallow a stomach pill. The doctor wanted us to just give her a chewable Pepcid every day. She got little or no relief from the medicine...I could tell because she would wake with horrible breath every morning.

She's a horribly picky eater, but I never really thought about it in terms of "I don't eat because food makes my stomach hurt". I also haven't thought about the reflux causing her to not sleep, and the combination of the two making her not grow.

Last night, she slept through the night. That's a total of three nights (not consecutive) over a period of more than 6 months.

YourMajesty, I don't give my daughter a second dose of melatonin when she wakes at night. It just didn't occur to me to do that. I'll take a dose and a glass of water to my room tonight in case she wakes.

 

[FayeW]

Wow, my dd, 12, has a 'tightness' in her chest a lot at night! We've all told her she's just imagining it.....maybe not it seems. She has an incredible amount of trouble falling asleep every night. But, she's tall (5'3") and really thin (95 lbs), so growth is not an issue here. Last night, after trying to fall asleep for an hour or so, she came into my room and told me that she thinks she needs professional help now. Looks like a visit to the pedi again. I'm really curious about the whole 'tightness' thing though. I have thought she was just imagining it.

It may be a growth issue, just not the one you are thinking of! You have just described several symptoms of "Graves Disease", which is the most common cause of hyperthyroidism. I have been researching it today because I noticed my daughter's eyes seem to be bulging, which is one of the most easily recognized symptoms. When I googled "thyroid disease in children" I found out about Graves disease. My daughter has several of the symptoms, and I suspect others that may be masked by the ADHD medication. Turns out, kids with Graves are often misdiagnosed with ADHD or other emotional/mental issues. I'm on my way home now to take her to our Dr. and get the requisition for blood tests, and a referral to an endocrinologist.

 

[Rafiki Rafiki Rafiki]

It's interesting that someone pushed this post to the front. I'm still waiting for my DD's visit to the endocrinologist. We go on April 3rd or 4th. We also have an appointment to the sleep disorders clinic.

In February, the doc put her on Prilosec for her reflux. She was still refluxing in March when we went back. However, she did gain 3 lbs...which is more weight than she's gained over the past two years. So she switched her to Nexium. I think she's only refluxed one time in the past three weeks. She's also eating like a horse!

As for the sleep...it's still pretty bad. Last night was particularly bad. After she woke me the third time, I took her to her room, put her in her bed, gave her some books and told her if she wanted to stay up all night to GO AHEAD. I just told her not to wake me again.

I hope she doesn't have growth hormone deficiency. I just can't imagine having to deal with a shot every day.

BTW, I did find a melatonin 3 mg extended release tablet. She's only taken them for two nights, but I didn't notice a whole lot of difference in her sleep pattern.

 

[FayeW]

It's interesting that someone pushed this post to the front.

QUOTE]

As you can see, I'm the guilty party! I did a search on Graves Disease to see what I could find, and your thread came up.

 

[Rafiki Rafiki Rafiki]

I thought I would update to my post, because it seems like so often we have DISer kids who have a problem and we all wonder how it turned out.

We went thru all the endocrine tests and a sleep study. The tests were quite traumatic for Sarah. All during that time, I gave her melatonin at night along with a dose of Nexium (which we switched to after a month on Prilosec). She still didn't sleep, but she did start to grow.

The tests for endocrine problems did indicate that a there could be a problem, but the endocrine doc wanted to wait another 6 months and do the same test again. The sleep study indicated that she had 7 waking episodes thru the night, but that didn't meet their threshold for a sleep problem.

Finally, the pulminologist suggested that maybe we should treat her for anxiety with a low-dose of Lexapro. We reluctantly tried the medicine coupled with her Nexium.

It is now 7 months later. Sarah weighs 45 lbs, marking a weight gain of 7 lbs in 7 months. She started sleeping through the night about 2 weeks after we put her on the anti-anxiety medicine.

The change in her is incredible. She slipped into her new school and acts like she owns the place! She's confident in everything she does, and she has now even shed her life jacket and is attempting to swim on her own.

She may not ever be a big kid, but she's going to do her best to run with them!

 

[Christine]

I thought I would update to my post, because it seems like so often we have DISer kids who have a problem and we all wonder how it turned out.

We went thru all the endocrine tests and a sleep study. The tests were quite traumatic for Sarah. All during that time, I gave her melatonin at night along with a dose of Nexium (which we switched to after a month on Prilosec). She still didn't sleep, but she did start to grow.

The tests for endocrine problems did indicate that a there could be a problem, but the endocrine doc wanted to wait another 6 months and do the same test again. The sleep study indicated that she had 7 waking episodes thru the night, but that didn't meet their threshold for a sleep problem.

Finally, the pulminologist suggested that maybe we should treat her for anxiety with a low-dose of Lexapro. We reluctantly tried the medicine coupled with her Nexium.

It is now 7 months later. Sarah weighs 45 lbs, marking a weight gain of 7 lbs in 7 months. She started sleeping through the night about 2 weeks after we put her on the anti-anxiety medicine.

The change in her is incredible. She slipped into her new school and acts like she owns the place! She's confident in everything she does, and she has now even shed her life jacket and is attempting to swim on her own.

She may not ever be a big kid, but she's going to do her best to run with them!

Wow that's amazing! And glad to hear something is working.

So, do they think this is some type of anxiety disorder?

 

[MareQ]

It is now 7 months later. Sarah weighs 45 lbs, marking a weight gain of 7 lbs in 7 months. She started sleeping through the night about 2 weeks after we put her on the anti-anxiety medicine.

The change in her is incredible. She slipped into her new school and acts like she owns the place! She's confident in everything she does, and she has now even shed her life jacket and is attempting to swim on her own.

She may not ever be a big kid, but she's going to do her best to run with them!

WOW - FANTASTIC weight gain!. My poor DS is 8.5 and is 42" and 35 lbs We keep getting be bopped all over teh place - no answers other than his bone age is delayed - gee thanks - lol!

I'm glad you found the right formula that works for her

 

[YourMajesty]

I thought I would update to my post, because it seems like so often we have DISer kids who have a problem and we all wonder how it turned out.

We went thru all the endocrine tests and a sleep study. The tests were quite traumatic for Sarah. All during that time, I gave her melatonin at night along with a dose of Nexium (which we switched to after a month on Prilosec). She still didn't sleep, but she did start to grow.

The tests for endocrine problems did indicate that a there could be a problem, but the endocrine doc wanted to wait another 6 months and do the same test again. The sleep study indicated that she had 7 waking episodes thru the night, but that didn't meet their threshold for a sleep problem.

Finally, the pulminologist suggested that maybe we should treat her for anxiety with a low-dose of Lexapro. We reluctantly tried the medicine coupled with her Nexium.

It is now 7 months later. Sarah weighs 45 lbs, marking a weight gain of 7 lbs in 7 months. She started sleeping through the night about 2 weeks after we put her on the anti-anxiety medicine.

The change in her is incredible. She slipped into her new school and acts like she owns the place! She's confident in everything she does, and she has now even shed her life jacket and is attempting to swim on her own.

She may not ever be a big kid, but she's going to do her best to run with them!

Excellent news! Thanks for the update...that was nice.

 

[goofy4tink]

That's great news!!! We're going to try melatonin and see what happens. Hopefully, having to get up at 5:45 in order to get the bus at 7 will help her sleep at night!!! I'm glad someone is having success in the 'sleep battles'!!!

 

[ilovepcot]

As the mom of a child with endocrine problems, it's great to hear some *positive* things happening with others. Hope you can continue with more great updates over the coming months.

 

[In a hurry]

I am so glad she is doing better!