Re: Hi All...Mathieu Update

[Guest guest]

Jay,

Many of our kids have had the stim test done for gh levels and few

have had any problems. Of course, if anyone is going to it would be

Max - and, yes, he did have problems.

The first time Max had one done he was only 7 months old. He was

hysterical each time they drew blood after giving him glucagon and

then he just fell asleep in my arms, or so I thought. What had

really happened was that his blood sugar dropped to 28 and he had

passed out! They quickly ended the test, gave him boluses of

glucose and he was revived soon after. But they would not let me

take him home. That is what led to his ultimate diagnosis of RSS

and reflux and hypoglycemia.

Several months later when Dr. H. came into our lives, she expressed

interest in doing the test again. We decided to wait a bit. At 2

years old she repeated it, but this time she was prepared. As

before, Max's blood sugar levels plummeted, but she revived him and

made him eat peanut butter in addition to giving him glucose via

IV. We were not as scared this time around, though, because she was

right there and she immediately knew what happened and what to do.

Other than the blood sugar thing, I am not aware of any

complications of the test. And if you are concerned about

hypoglycemia, then you can make the doctor aware and be prepared.

With Mathieu's low IGF-1 levels, you may find that he is gh

deficient and it will not be any trouble getting gh for him. I

don't know if that is a good thing or not, but at least the decision

would be made for you and you would not have to feel as if it is a

major decision that you have to make. Does that make sense?

Jodi Z

[Guest guest]

hey jay!!

christopher had the stim. test done at about 2 1/2yrs and he was fine.

we just made sure they tested his BS every time they took the blood.

he actually slept through most of it (since the drug they give them

makes them sleepy). good luck!!

jodie c

[Guest guest]

> Hey,

Hi Jay,

Sounds like you have a lot going on - I think the worst is just not

having a diagnosis and a plan. However, it sounds like you are

totally on top of this and doing well managing Mathieu's health.

Good luck, , mom to 5 and Emerence 29 mo 32 " 21lbs

>

>

>

> You probably do not remember us, but I am a lurker still. Mathieu

is still

> not diagnosed with anything. A little recap:

>

>

>

>

>

> They were a little concerned with IUGR at around 30 weeks, but with

an

> ultrasound noted the only small growth was his femur bone. All was

well

> until he was about 6 months when he took a rapid plummet from the

50% to

> under the 3% and he making there still at 2 ½ years. He is not as

drastic

> as an RSS Toddler he is now 32 " and 25 pounds but his extremely

slow growth

> delay with no diagnosis to pinpoint, along with a long history of

diarrhea

> and fevers and a ton of other stuff has us all still confused. We

have been

> everywhere, and tested for everything. He appears to be a

developmentally

> normal child that is just small, and Endo is now contemplating

regardless of

> what the diagnosis is we may want to start using GH to help him at

least

> catch up. The last x-ray they did showed growth arrest lines which

can

> appear for many reasons one of which is usually when a child is not

reaching

> growth potential. He still has fevers, eats like a little piglet,

and is

> now showing signs of sinus issues to the point that he has been on

> antibiotics since April after an x-ray revealed his cavities were

clogged.

> We are visiting ENT about this in August, and the Endo even noticed

his left

> ear has some scarring related to all the drainage. He had problems

with his

> vision and go every 4-6 months in hope we can slide glasses off one

more

> time.

>

>

>

> She looked at his IGF-1 taken in December and it was at 24, normal

for him

> is at least 100. She said that was pretty low and asked if we

thought about

> doing the stimulation test. I know a friend that had this done on

her 10

> year old, but I was curious if anyone had this done on young

toddlers. I am

> sure some of you have not considering RSS is a diagnosis. It can

be scary

> to have the Stim test done, they can have many reactions, (although

rare,

> but some serious) IU am sure we will not be starting GH until he

is 3

> (granted if the stim reveals he needs it)

>

>

>

>

>

> I can say the good news is we really get good use out of his

clothes, he on

> his third season of his shorts and still wears a lot of his 3-6

month

> clothes, very nice. Shoes are purchased maybe once a year which is

also a

> big money saver, but it is time to see him reach his true

potential, I am

> sure you all understand that!! :-)

>

>

>

>

>

> Any information is appreciated!!!!

>

>

>

>

>

> Thanks a lot Guys, Jay

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>