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Endocrinologist-thoughts /experiences

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Crohn's Disease
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Posted 2/28/2010 9:49 PM (GMT 0)
 

For those of you that were either diagnosed as a teenager (or had a teenager diagnosed) did you ask for a referral to an endocrinologist (specifically for height as regards to puberty) If so, was treatment given and did it work?

Did speak to the gastroenterologist about this-he said we would have to go through the Dr for a referral although his opinion was that there was still a couple of years worth of growing room yet and I do understand that now he is gaining weight a growth spurt may follow. Would hate to leave it too late for anything to be done but at the same time do not want to ask for something that may not be needed.

Anyone with any experiences?

Posted 2/28/2010 10:07 PM (GMT 0)
I don't have any experience, but I'd think it wouldn't hurt to consult one. I was diagnosed at 19, so I was completely grown and it wasn't an issue for me. At least you could make sure you're doing everything you can. Maybe they would have suggestions or things to watch out for that we wouldn't think about. Also, they could make sure he's getting all the supplements he needs.
Posted 3/1/2010 6:28 AM (GMT 0)
I stopped growing at age 15 which is when I believe I first had crohn's. I didn't grow for 3 years then grew another inch and a half and put on about 35 pounds. I believe that was my first remission.
Posted 3/1/2010 9:15 AM (GMT 0)
Thank you both, so he could quite possibly have some growing room left and with him gaining weight it could still happen. I guess the sensible thing would be to start the process of referral (think there is a bit of a waiting list on this one) so an appointment should fall post exams and if he grows in the mean time I can cancel it.
Incidentally Grandpato2, this may sound stupid but what is the actual definition of remission? Is it based on blood tests or is it more like when the symptoms get better(pain goes, weight is gained etc) ? I apologise for asking what sounds like a 'thick' question but my son's pain has stopped and he is gaining weight so I would assume that he is in remission yet the consultant says he is doing 'reasonably' well (would have asked him but it was not said at appointment but in the letter he wrote to Dr)-I was talking to someone who is a specialist (in another field) who said that 'reasonably' well is like getting a grade B in a exam-not top of the class but working on it lol. Does this sound about right for Crohn's too? If so, can I assume then that he is nearly in remission?
Posted 3/1/2010 2:37 PM (GMT 0)
If it were me and my child, I would make the appointment and follow through with it regardless of any progress in growth he makes in the mean time.

I am only 5' tall. At every pediatric appointment my mother would be told that if I hadn't grown 1/4 of an inch we would have to consult a specialist. This was long before I showed signs of CD (that happened at 13), but who knows if I might have gotten a few more inches if such a wait and see approach hadn't been taken. It would be nice not to always be the smallest person in the room.
Posted 3/1/2010 3:19 PM (GMT 0)
I have actually lost at least an inch with this disease (althought I also had orthro reconstruction), even though I was dx as an adult. Furthermore, I developed thyriod issues with this disease as well. I am the shortest person out of my family, even though I am still fairly tall for the rest of the world.  So I wonder how long this disease was cooking before I was dx.

As for remission, that is one stool a day that is an s/elipitical shaped.  No signs of inflammation...etc. No vomitting. No blood.

Posted 3/1/2010 3:47 PM (GMT 0)
Thanks for the replies, think we will look for a referral, he is currently 5'5" or 5' 5 1/2" and I know he would like to grow a few more inches -would hate to possibly miss the window of opportunity and have him feel resentful in later life.
Bless you Zanne, but you know what they say about good things coming in small packages :)
It appears lots of people have this disease long before they are actually diagnosed, wouldn't it be nice if medical practioners were more pro-active in recognising the symptoms instead of appearing to treat it as everything but Crohns.
Thanks for the definition Navy does that also apply to those who have constipation rather than the other as he currently goes every other day?
Posted 3/1/2010 6:58 PM (GMT 0)
vixen,
I am by no means an MD, those were just very general things my GI said to me. I just want to reitterate that I think getting all the info that you can is a good idea. So I would even say get a second opinion from another endo.
Navy
Posted 3/1/2010 7:58 PM (GMT 0)
No problem Navy, you may not be an MD but people who have the disease have a whole wealth of knowledge, but I do appreciate what you are saying.
Think we crossed wires a bit lol it was the gastro who said he thought there was still some growing time left don't think we will leave it to chance though. Talked to DS this evening and he would like to follow it up so will arrange appointment to see Dr tomorrow when he has his blood test.
Thanks again
Posted 3/1/2010 8:19 PM (GMT 0)
Hi when I got diagnosed at 13 the doc said it would affect puberty. The things it affected was my periods did't start till I was 17 I could live with that!!!!! and I don't have big boobs!its a good job my husband is a leg man! hee! hee!no problems with growing height wise i'm 5ft 9in Bev x
Posted 3/1/2010 8:30 PM (GMT 0)
crohnielass- They do say every cloud has a silver lining-that must have been yours :)
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