Re: Helen/One more thing...

[Guest guest]

Helen:

Also, the endocrinologist said that the arthritis itself can inhibit

growth. His rheumy said the same thing, and that many of his patients had

growth issues, some just from the disease, some from the pred and the

disease.

Also, another test they will do is get a bone age xray. This is a simple

xray of the child's hand that is interpreted by the endocrinologist.

Rob's bone age was about 20 months delayed at the onset of treatment,

when treatment ended, he was still about a year delayed.

and Rob 17 Spondy

On Sat, 23 Sep 2006 19:49:05 -0000 " hburger64 " <hburger64@...>

writes:

--Hey ,

Can you tell me more about how everyone ( doctors) handled Rob's

growth issue, what tests were ran, where you started and what was

discovered etc.

We have talked about the possibilty of the prednisone causing the

issues, but Nick has only been on 1-3mg this past year. Hardly seems

enough to cause any issues, but he has been on pred daily for 2 1/2

years now. It could be the disease itself, if it's being under

treated, but Nick has had a fairly good year since starting the

remicade. So that seems remote.

So I guess we rule out tummy issues and move on from there. Is this

how Rob's was handled. I am assuming if his tummy is all ok and hes

absorbing food as he should, then we move onto endo. Just how many

specialists is he going to have?? we already have a ped, the eye

guy, the rheumy, the cardiologist and the genectist. Too

many 'ologists'.

Hows Robs Knee doing???

hugs Helen and (9,systemic)

- In , snooksmama@... wrote:

>

> Helen:

> Rob had his UGI and SBFT at age 12 and did just fine. Course, he

was 3

> years older than Nick is now, but Nick is one tough cookie.

Likely, he'll

> do just fine!

> Make sure that he walks around while they are waiting for the

barium to

> move thru his system...it'll speed things up.

> Have you discussed the fact that the prednisone could have slowed

down

> his growth? And, have they mentioned consulting a pediatric

> endocrinologist? You know that we went through that...

> I'll be praying for Nick next week.

> and Rob 17 Spondy

>

> On Fri, 22 Sep 2006 00:07:16 -0000 " hburger64 " <hburger64@...>

> writes:

> If you could, please think of on Monday.

>

> He is scheduled for his upper GI with small bowel follow though.

He

> cannot eat past 6.15am, the test begins at 9.15am and can last 8

> hours!!! I have no idea how Nick is going to handle not eating for

> 11 hours, the kid is so cranky when he doesnt get food when hes

> hungry.

>

> Hubby is taking him as I have to sleep. I hate not being there for

> him but cannot work sunday night and monday night with no sleep

> monday, during the day. Next week is a rough week for Nick, he has

> the upper GI monday, his rheumy appt on wednesday and then

remicade

> on friday. We will be making the drive to Childrens Hospital 3

times

> next week.

>

> I just hope we can get to the bottom of why Nick is not

> growing/gaining weight.

>

> Thanks

>

> hugs Helen and (9,systemic)

>

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