When the Pediatrician and GI disagree....height related

[Cupkatemom]

So today we took our kids in for their annual pediatrician appointments. My non IBD child grew 1 3/4 inches in the past year and is staying close to his growth curve (he fell maybe 5-8%). Reese, our child who was diagnosed 1 year ago, started to grow again and grew 1 1/2 inches (but continues to fall off the growth chart - current 29% vs. the 60-70% pre diagnosis). The GI is not concerned about her growth and says she will catch up, but the pediatrician, after following her since birth, says this is a concern and that there is only a small window of opportunity to get her on track before puberty...so to the endocrinologist we go.

Part of me trusts the GI and I have faith that she will not lose this growth, but the other part of me has this deeper trust with our pediatrician who has been with us through so much. I just don't want to waste my time and run around in circles. Why can't everyone be on the same page? I don't like worrying...especially when we are on the cusp of remission.

 

[my little penguin]

Most endos will not do anything if it's crohns related .
If her bmi is good and bone age is less than actual age you have time .
A lot of parents have been to an endo - good to go for a piece of mind just in case.

Does the Gi have access to her complete from birth growth chart.
Our Gi had DS's from age 2 so that helps a lot.
If you have only been dx about a year-you need to take into account what % she was at dx and when she started griwing again . Pred stalls growth for about 6 months sometimes more . Low bmi will also stall growth . Simmering inflammation will stall growth .

All
That said if her crohns has not been under control for the entire year I would not expect much in terms of growth .
Endo can't really help if lack of growth is due to crohns only if it's other reasons.

Case in point Ds grew maybe an inch the first year ( mild inflammation-6-mp)+ pred)
But after 3 years he has grown 8 inches and gained 38 lbs. he is almost back to his original weight /height curve .
The right meds and Peptamen jr for three years has helped a lot .

 

[Mehita]

MLP pretty much summed our experience with Endo as well. They're pretty hands off with IBD kids because so much is not in their control.

I'd still make the appt and see what they say though. I found it all fascinating and it gave me some peace of mind. Be sure to write down your family history, husbands puberty details, etc. it helps a lot. Our endo had some algorithm on her computer that she plugged a crazy amount of info into and out popped predicted height under different scenarios. Like I said, fascinating!

 

[malorymug]

I'm following this thread with interest. We are in a similar situation with lack of growth and falling off the growth chart at age 14. My GI isn't concerned but we are just 6 months into treatment. I'm worried about puberty and growth. I'm getting ready to get my kid into both endo and rheumo this winter to check things out and establish a relationship in case we don't see improvements.

It is interesting that most endos are hands off with crohn's, seems like they should partner up. Our ophthalmologist was very quick in increase the frequency of visits because of crohn's.

 

[Mehita]

I think (?) the hands off thing is more due to the fact that if a child isn't absorbing due to inflammation or stricturing, there isn't much an endo can do. In most cases, an endo's best tool is growth hormone injection, but even that only increases height by 5% (or maybe it's five percentiles?). Sorry, can't remember what our dr said. Toss in a flare and some pred in the middle of hormone treatment and you negate what the endo is trying to achieve. I think it comes down to the likelihood of success is lower with our kids.

On top of that, our kids have gone through so much already with their disease. I know there was no way my needle phobic son would ever agree to injections, so it was off the table from the get go.

She did talk a lot about "catch up" growth and said if my son could stay flare and inflammation free for at least a year, he could potentially experience catch up growth and get back to his pre-dx percentile (75%).

I think it's worth a visit, because they do test several things just to make sure everything is okay.

 

[Jmrogers4]

This brings back PSTD for me we were in this spot a year ago and had our first visit with an endo on 12/31. It was a 3-4 year journey of me saying shouldn't he be growing more with the answer being "he will". It was not until we really sat down with growth charts and GI realized that he had only grown 1-2" over the last several years and he was now 14 1/2 so really should be growing by leaps and bounds.
We ended up doing a full endo workup only because at first he showed he might be low in growth hormone which turned out he was not. We also started remicade at the same time and for us it really was a matter of his disease was not under control like we thought it was. After about 4-6 months on remicade he really started to shoot up and has grown 5.5"-6" since April.
Endo was definitely worth it for us though if only to ease our mind at the time. Jack was 75-80% pre-Crohn's and while he hasn't quite gotten to that. He started out about 10% a year ago and is now 32% and his height velocity is in the 100%. He was also almost 2 years behind in regards to bone age at the time so if I calculate for a 14 year old he is in 69%.

 

[crohnsinct]

Same experience as MLP here. Took a good long while for O to get nice and healed and then whoa nellie did that kid grow! She grew to 3 inches over what the endo and GI both predicted for her!

My younger daughter sees an endo for precoscious puberty and she definitely is behind on growth, her bone age is not delayed and she has gone through puberty and the endo still advised against any intervention. Go figure. Funny thing is she is now going through a full GI workup because of other indicators so who knows.

I also hate the running in circles but I would make the appointment. More info couldn't hurt and if it sets your and the ped's minds at ease then it is worth it.

 

[Cupkatemom]

Thanks to all of you for your feedback. Our appointment isn't until mid-March...will update you all then if I hear anything different than what you all have learned.