Does anyone have a child with endocrine problems?

[Rafiki Rafiki Rafiki]

A couple of weeks ago I told you about my daughter who hasn't really ever slept through the night...and she's 7 1/2 years old. She also has significant anxiety over getting to sleep at night. We went to our primary care doctor who then sent us to a pediatrician.

Here's what the pediatrician did.
--switched her from Pepcid to Prilosec for her reflux problem
--recommended we dose her with melatonin every night
--referred us for a seep study
--referred us to an endocrinologist (because she still only weighs 38 lbs and has only gained 4 pounds in 3 years.)

My question: What will the endocrinologist do? Will they typically do blood tests? Does it take several visits to diagose?

The closest clinic for endocrinology and sleep studies is a two hour drive. If I knew what was going to happen in advance, I could plan for it.

I'd love to also know about what they do in a sleep study for a young child if anyone knows.

TIA

 

[Dan Murphy]

No ideas, Paige, but a for Hannah and you.

 

[Trish5768]

My DS8 and DD11 have been seeing a pediatric endo for 2 years. (they both have Grave's Disease) The first visit is a pretty extensive physical, family history and bloodwork. If needed, they will order other tests. I can't help you on the sleeping part. If you have other questions feel free to PM me. Good luck!

 

[Rafiki Rafiki Rafiki]

No ideas, Paige, but a for Hannah and you.

Thanks, Dan. It's actually Sarah.

BTW, I love Dan Murphy hugs!

 

[minkydog]

it's been awhile since I saw a sleep study, but as i recall it's pretty painless. They tape some wires to your chest to monitor heart rate and breathing rate. they put a wire with a small light on it on your finger to monitor your oxygen constantly. Sometimes they tape a special wire inside your nose to monitor reflux. Then you go to sleep and the technicians have you under video surveillence all night while the monitors record stuff. The technicians make notes about when you were awake, how long you sleep, what position, if there are any breathing problems. When you wake up, they take all that stuff off and you go home. It takes a few days for the doctor to analyze the data.

hope it all goes well

 

[Dan Murphy]

Thanks, Dan. It's actually Sarah.

BTW, I love Dan Murphy hugs!

Hannah is the little one? Too many to keep straight, LOL.

's

 

[YourMajesty]

Good luck with your DD. I was just thinking about your orginal post and wondering what your Dr thought. I'm not familiar with the test or the type of Dr she will see but I'm glad to hear that they are moving to get some answers. My DS (8) has sleeping issues too and it would be nice to find some answers. He also seems to have high amouts of anxiety (sleep and other stuff).

 

[Rafiki Rafiki Rafiki]

My DS (8) has sleeping issues too and it would be nice to find some answers. He also seems to have high amouts of anxiety (sleep and other stuff).

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.

 

[minkydog]

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.

We started using melatonin with DS10 around Christmas. he's autistic and had developed a mild sleep disorder--well, mild to his doctor. It was every night awake & swinging from the chandeliers for us. About 2 months of that & I was ready for the funny farm. We started Christian on 3mg and it has been virtually a miracle--completely turned his habit around. Now if we miss the dose, he goes right back to staying up until 4-5am. Getting enough sleep has made a huge, positive difference in his personality.

 

[golfgal]

I would call the clinic and ask these questions. If you explain that you are coming from a long distance, they may make a couple appointments for you in one day so she can see the dr in the morning and then do the blood tests in the afternoon.

We did growth hormone testing for DS and that was pretty easy, but it takes about 3 hours. They basically simulate sleep with medications that usually make kids fall asleep anyway. They check their blood every 30 minutes or something like that and measure how much growth hormones they are producing. They also took xrays of his hand to measure the growth plates and see how much growing they have left to do.

You could see if they will schedule the sleep study for the same day as well and then you would just have to plan to stay over one night.

 

[The Mystery Machine]

My 9yodd has been on growth hormone for 3 years now. It is a daily shot given in the evening by me.

She did not have the endocrine testing done as she was clearly not growing, age 5-6, at all in height or weight. She was very tiny.

Now the doctor I went to just put her on the growth hormone. My dd was also a premie and her length at birth was 16 1/2. This qualifies her for SGA (small for gestational age).

In hindsight, as I have changed Doc's due to moving he said that my dd should have been checked for tumors on the pituatary gland first thing.

The first thing she did was gain weight!!!!! She began to look normal.
I would have never believed it.

Today she looks like any normal 9yo and is happy about that.

 

[Rafiki Rafiki Rafiki]

Mystery Machine, how much did she weigh when she was 5-6 years old? My daughter isn't bad, height-wise. She's 42 inches tall.

I can't imagine having to give her a shot every day. She is so afraid of needles it's unreal.

We're military, so the doctors tend to get most all the testing done we need. I just can't stand the length the whole process takes. It drives me nuts.


Golfgal, can you tell me how they sample this blood? Do they put some sort of shunt in her arm?

There's always a chance of getting appointments on the same day if I'm willing to wait 1 to 3 months. It's just amazing how these people don't seem to understand how difficult it is to keep sane when you get woken every 30 minutes to an hour each night. I'm so sleepy all the time...

 

[jennyl772003]

My son also is on growth hormone, and he may have some thyroid and cortisol issues as well. Right now the levels are low average.

For a growth issue, you will probably have blood drawn, Xray of the wrist and height and weight checked. They will probably then want you back in 3 months to recheck the height and weight.

If you have any ?s on the endo side of things just ask. We've been seeing one for 4 years now.

 

[Rafiki Rafiki Rafiki]

They will probably then want you back in 3 months to recheck the height and weight.

I'm so tired of being sent away for 3 months, 6 months, a year...especially when they give me half a band-aid to deal with an issue that so affects everything I do.

Are there any other ways to deal with growth hormone shortages other than shots? It seems like when faced with the thought of having a child who is smaller than normal or one whose body looks like a pin cushion and is extremely anxious from day to day about the whole needle issue, I would choose having a small child....

Of course, if it was one of those things where my child would suffer something much worse than the thought of a shot every day, I would treat her. It just seems like such a horrible treatment to me.

 

[The Mystery Machine]

Mystery Machine, how much did she weigh when she was 5-6 years old? My daughter isn't bad, height-wise. She's 42 inches tall.

I can't imagine having to give her a shot every day. She is so afraid of needles it's unreal.

I believe when we started the process at 6yo she was 34lbs/39".

The key is her growth chart. You need to take her in every 3 months and have her charted. You will see any pattern over a span of a couple of years.
My dd was very tiny so her ped agreed that we needed to keep an eye on her growth. Through this process we were able to determine when she stopped growing.
Consulting a endocrinologist early is good. It is better to err on the side of caution and be on top of it.

As far as the shots, I hate giving them and she still hates getting them.

 

[jennyl772003]

The shots really aren't that big of a deal for us. We use the NordiPen, which is really easy to use.

There is only one way to administer growth hormone since it is a protein. If you were to eat it, it would just break down in the stomache and be useless.

They weren't fun for us at first, but now it's just an everyday thing, and DS doesn't mind one bit.

 

[The Mystery Machine]

They will probably then want you back in 3 months to recheck the height and weight.

Are there any other ways to deal with growth hormone shortages other than shots? It seems like when faced with the thought of having a child who is smaller than normal or one whose body looks like a pin cushion and is extremely anxious from day to day about the whole needle issue, I would choose having a small child....

Of course, if it was one of those things where my child would suffer something much worse than the thought of a shot every day, I would treat her. It just seems like such a horrible treatment to me.

Just to tell you..no there isn't. This is a synthetic hormone.

My dd also HATES these shots. I did give her a choice however. I told her she could be small and that would be OK by me. I explained the risk factors. You can't go back and get that time back. Every year that passes you "lose" for growth opportunity.

However kids are cruel and height is an issue in society. She was smaller than most 2yo's in Kindergarten.

She was in K when she started them, Feb to be exact. It took a long time to get into it. It was awful, I am not going to lie.
We pressed on and now she still hates it but does it.

She also passes out when she gives blood, or has any other procedure. So figure that one out.

Our hope is that she can continue with them until she is done growing. She is trying to reach the height of 5ft.

 

[mrsmom]

My son is also on growth hormone shots and he has been for 5 yrs now and his is needleless. It's like air injected. He hates needles and doesn't mine this. He had xrays and a tests such as blood and MRI. to detect problems
.
My dd 11 is on a cpap machine because of breathing problems and she has sleep studies done every 6 months. They hook her up to all kinds of leads ,In her hair and on her neck ,Legs, chest, face. and they watch her sleep and watch how many movements and awakening she has and if her breathing changes and if she goes into differernt rims of sleep.
Kim

 

[cats mom]

I hope you are able to find the answers you need.

As for the shots... not growth hormone related, but my DD has to have an injection every day. (There for awhile it was 2 a day)

Unless they can come up with new treatments (come on researchers!) hers will be every day for the rest of her life.

It's never fun and of course we all wish it was not necessary - but we're to the point where it is a part of the daily routine and while she does not like them, she really does not dread them anymore either.
She even gives them to herself sometimes now.

I understand your reluctance though. For us the alternative is so much worse that the daily shot... probably tougher to justify for you.
Good Luck to you!

 

[golfgal]

Yes, they put a shunt in their arm. They are pretty sleepy through the testing and I don't know if DS even knew they were taking blood when they came in.