Thoughts on Endocrinologist?

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DS is holding steady (knock on wood) since starting Remicade. He gets his third infusion in a week. I've heard that kids sometimes have growth spurts when starting Remicade and am wondering how long I should give him before looking into an Endo appt. I'm concerned because not much is changing and he's been on four (five?) courses of pred in the last two years. He does have signs of puberty.

He's been around 85 pounds and 4'10" for a good seven months and he'll turn 14 in March. It has caught the attention of his GI but not enough for him to refer us to Endo. I always feel like I'm behind the ball when it comes to stuff like this... maybe I'm just borrowing trouble?

Thoughts? And what exactly can and Endo do? What will we learn from it? Is it worth trying to squeeze in an appt before the end of the year for insurance? My original plan was to wait until March, but our insurance is changing and I'm thinking it might be better to move it up to this year.

I'm 5'2", early bloomer, and the Hubster is 6' and was a late bloomer. About as opposite as oil and water.
 
I think it never hurts to follow up with an endocrinologist. We have gone to one a couple times for my son and need to get back in next month, actually. They mostly look at the long picture of growth, we took a hand x-ray to see the growth plates to see that my son was 2 years' delayed in growth - meaning, he will catch up eventually, it's not missed growth. It's peace of mind, for sure, though still frustrating. It's probably more critical now that yours is 14, they might consider growth hormone before it's too late to get in the catch up growth.
 
yeah that^^^
a consult does not hurt just more info to form a better picture of what is going on.

I can tell you DS was on Remicade for about 4 months and then he started to grow again. He had been on pred for the entire 3 months prior to Remicade.
To give you an idea
at dx 2011 DS was 4'2" and 50 lbs ( barely on a good day)
Starting Remicade I think he may have been 4'4"
A year later of remicade and then humira he is 4'8" and 80 lbs and still catching up on growth he lost from age 5 to 7.

An endo can help you figure out if you need to "do" something or if its safe to wait a bit.

We had time with DS since he was only 9 but still concerning when their growth slows down.
 
Haven't seen the endo yet, appt is 12/31 (how's that for squeezing in before the end of the year). So Jack has not grown in height the last year. He turned 14 in July and is 5'1" at 10 years old when he was diagnosed he was 4'10". His GI was not as concerned (although he is concerned) about growth but more the lack of any sign of puberty.
We are doing the endo to rule out any other issues that could be causing it and getting bone age scan. Basically GI said if no Endo causes we need to look at remicade as most kids have shown growth with it.
I know how you're feeling though, it's hard to be patient because what if being patient means that you missed an oppomrtunity to do something you should have done. I feel a little as my worries were brushed under the rug as I have been saying for the last several years "Shouldn't he be growing/developing?"
 
BMI is 17.8 and 34% according to your data plugged into this calculator, using 14 years old. http://www.halls.md/body-mass-index/bmi.htm So weight by itself shouldn't be a reason for slow growth. Using 14 years, he's at the 2nd percentile for height. Unless he's always been growing at that percentile, it would probably be a good idea to get him seen.

Do you know what percentile he was growing at during most of his childhood? Was he following his percentile? How long has he had symptoms of Crohn's? Was he low weight/height during his childhood?

An endocrinologist would look at the growth chart and do a good exam, check a bone age xray (which most likely will be delayed and can predict final height) and draw blood. The growth chart tells a lot. Active Crohn's definitely can delay puberty and growth as can untreated celiac. The most important thing to rule out is hypothyroidism.
Depending on who you go to, the endo may order a lot of expensive labs.

There are treatments (testosterone) for delayed puberty if a boy is very unhappy with not happing any signs of puberty.
 
I just have to laugh sometimes because DS was the biggest, fattest baby around. Oh, my aching back! He was always in the 95th percentile for weight and height. Slimmed down as a toddler and preschooler as expected, then just sort of stopped in K-2nd grade and fell off the growth charts. He was dx'd in 3rd grade with Crohn's and Celiac at the same time (he's in 8th grade now).

After going gluten free, he got up to the 5th percentile for weight, 10th percentile for height and has followed that path ever since. He wasn't treated for Crohn's until last year and has yet, until now maybe (?), to be in remission that lasts longer than two months. He's essentially had Crohn's symptoms for the last two years, mostly in the form of vomiting and malabsorption.

That's why I wonder if we should give Remi a chance here, but then again, he's almost 14. He is starting to get some acne, starting to have stinky armpits, and thanks to his perianal abscess, I became aware that he does have hair down yonder. That was a shocker!

Hmmmm.....

If I can get the GI to agree to a referral, we might be able to get in this year. If I call on my own, it probably won't be until next year anyway.
 
We meant with the Mayo Endo.
He feels that all kids with chronic disease should have an Endo on their team.
Not that you'll need them all the time but once a year everything can be track.

FYI
To all the parents with YOUNG children like mine, The Mayo said keeping track through the years is the best because problems can be fixed easier at a young age then when their nearing puberty.

Grace new Endo at Devos couldn't get her into March.
 
Making the appointment couldn't hurt but if the disease is not under good control that is most likely the culprit. From our experience, the child has to get into good remission before they are absorbing everything and even then weight came first and then growth. It was a good 5 months on Remicade before we saw O start growing.
 
In the first 2 years of life, it's not unusual for children to cross percentiles. So there are lots of large babies that move to lower percentiles. It sounds like he was on the 10th percentile for height for a few years and maybe only recently dropped below. That could be from more active Crohn's, delayed/later than average puberty, measuring error or other endocrinological issue (low thyroid or other). Boys with later or delayed puberty may "fall off" their percentiles at this age because the other boys have already started puberty
(http://adc.bmj.com/content/51/3/170.full.pdf p 174 fig 3 bottom figure shows growth velocity. Perhaps you can see at age 14 some boys are having a growth spurt, growing 7-12 cm/yr and the shaded ones (later puberty) are growing slowly at 3-6 cm/yr.)


He has some signs of puberty which is good. Puberty has 2 components: adrenarche (the adrenal sex steroids which can cause acne, underarm odor and some pubic hair) and gonadarche (testicular growth, testosterone, penile growth, increased muscles, growth spurt, hair (pubic, underarm, eventually facial, chest). These two parts of puberty are independent, with adrenarche usually coming before gonadarche. An endocrinologist can determine by physical and labs if he has started gonadarche; this is what will lead to increase in height.


The above should not be construed as medical advice; it's just information from a knowledgeable source.

Can you tell me why his doctor didn't choose to treat the Crohn's when it was diagnosed?
 
We see an Endo because we had a year of zero growth. I'll share our experience although we are still not yet fully diagnosed Crohn's. The first appointment they took a very detailed (90+ minutes) medical history and did their own measurements (weight, siting and standing height). We arranged to have a bone scane/x-ray done before the appt. so we'd have it to discuss and then we talked about possible causes and made a plan to wait 4 months and remeasure before taking any steps.
At our first follow-up, there were no real changes in growth but we were waiting for some genetic test results and everyone agreed to wait and see if there was a condition causing short stature in the mix for Ds. Those came back negative but Ds started on an elemental formula and literally shot up in both height and weight immediately and we decided to continue just following his growth.
I think our next appointment is probably planned as an "exit" appointment since he has been doing well, but I will ask to schedule another follow-up. Having done more reading here and elsewhere about growth in kids with chronic illnesses, I really do want an Endo on our team. Among other things, I feel like other Drs are too satisfied with Ds being back on the growth charts. I feel like they are overlooking the fact that Ds used to track near the 50%ile. So being in the 5th is better than off the chart, but I don't think we'll have hit a really good place health wise until we creep closer back to 50%. I think our Endo is the person who will be closest to sharing or at least understanding my perspective.
 
Great info, xmdmom. Thank you!

His first GI was just... dumb. He said to go gluten free first for the Celiac, which we did and we had a brand new boy within four days. It was truly amazing. While biopsies indicated Crohn's, DS never showed symptoms really until later and things were always confused with the Celiac. He's vomiting? Must have gotten gluten. He's short? Most celiac kids catch up. Diarrhea? Gluten. Blah, blah, blah. And his inflammation makers, while slightly elevated, were never impressive enough to take action. I was told all Crohn's kids will always have some inflammation. Ha! If I knew then what I know now.

Then, when DS finally started showing more severe symptoms and was flaring we couldn't get in to see the GI for months. Even the NP was booked out three weeks. Not happy. No priority whatsoever for flaring. We switched clinics and doctors and started all over again. Same story with second GI though he finally started treating with Pentasa and pred. Ditched him after a year of pred, pred, pred.

So, here we are, third GI and finally making progress. And therein lies my fear of possible lack of treatment, if there even is a problem.

I'm going to call Monday. Just decided right now. As you all said, a consult can't hurt anything, so why not?

Thanks!!
 
When we met with Endo last summer it put my mind at ease. He tested his hormone levels. He as able to tell us that he's on the bubble of puberty. Testosterone was high. And he tested growth hormone and it was all good too. Other labs came back good too. He summed up that his inflammation was the cause of his growth issues. Also did bone age. Found out he is 1 1/2 yrs behind which he said was good cause he has time to catch up. Soooo I thought the visit was benefical and comforting.
 
I second all the advice and I'm glad that you're calling, esp since it takes so long to get in as new patients.

We've had an Endo since birth as M was born hypothyroid (either w/out a thyroid or w/one that wasn't working). She sees her Endo twice a year and when she was dx'd w/crohn's this year it was great to already have the Endo on the team, who we've needed a few times.
 
Did you get in to an endocrinologist?

We just revisited and I was surprised that he's now considering doing something. My son, 12, is now about 3 years' delayed and though his height is near the growth chart slope, it's not matching his weight gain. I guess that's when to take action, when the BMI is increasing, not flat. We'll do bloodwork next month to check levels and decide what to do, if anything.
 
Thanks for asking, Jenn. I never followed up because once DS started Remicade in November everything has slowly been falling into place. He's gained about 11 pounds and just over 1/4" in height in the last three months. Remicade has been wonderful and he just had his first set of completely normal labs in five years, so I'm hopeful the growth and gaining will continue.
 
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