Endocrinologist?

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Mehita

Mehita

Joined
Nov 12, 2011
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DS had an ophthalmologist and GI appt today and everything continues to be good. Need advice on two things though.

One, GI said platelets were either low or on the low side if normal. He wasn't hugely concerned but was puzzled why they were at that level. He asked if he'd had a virus when labs were taken at his last Remicade appt and I don't recall him being ill at the time, so we're not sure what to think. Thoughts?

Two, the GI is now all of a sudden concerned about growth. He's 20th percentile for weight and 10th for height, both the highest they've ever been since dx in 2008. Every time I've asked about growth in the past, he's said he's only concerned if it plateaus on the charts. DS is in his biggest growth spurt ever right now, so this is coming out of left field. Anyway, he wants us to see an endocrinologist and we did a bone scan today. His chronological age is 14 years and 2 months. His bone scan age is 14 years. Do you think that's worth an endo visit? Especially with him growing by leaps and bounds right now? Will an endo be able to tell us anything exciting? Or... maybe it's worth a visit to get a baseline?

What do you all think?
 
Platelets were 235 and the range is 150-450. The last several times he's been in the 230-250 range. Could this just be HIS normal?
 
Jack is the same percentiles, actually I think he just moved up to 12th for height. Same thing happened with us they were not concerned until he hit 14 and then it was like we need to hurry and do something about this.
As you know we ended up seeing the endocrinologist, we did the growth hormone testing. It was a long day of pulling blood every 1/2 hour.
How's puberty progressing? It probably wouldn't hurt to have a visit and see what the endo says. More information and all that. It certainly eased my mind to know that all Jack's issues had been due to disease activity and nothing else. I figure this year is going to be a year of major catch up growth wise/puberty wise as long as I can keep him healthy.
 
Just checked Jack's tests for platlets. His seem about the same as L's. Here's the last few tests since January
308 256 234 239
 
Johnny just turned 14 and is definitely in a growth spurt. His platelets were 197 at his last blood draw (about a week ago). Ref 135-466. They were at 353 in November when he had his pneumonia. But have varied in the two hundreds most of the time over the last two years.

What are his alkaline phosphatase numbers? Johnny's directly correlate with how much he is growing. The went way up May-October last year and then went down as his growth slowed down in the winter. They have just gone back up again.

I would take the referral and go to the endocrinologist. The window of growth will close soon and the information could be useful. Our endocrinologist never prescribed any treatment but it was extremely helpful and informative. I do know a few boys with crohns who get growth hormone injections to speed things along and growth hormone is shown to help with treatment as well. I was glad we went.
 
^^^ yeah that
If our gi says please see xyz then they tend to have good reason.
Once we get there - things may change but we tend to go for the eval and then decide .
Given his age - I would go.
 
DS last platelets were 246 ref range 156-370??
His are always in the two hundreds except at dx then they were over 400 and after surgery down to 82 .
Not sure why the concern ??
 
Alkaline phosphotase has been in the 350's since starting Remicade seven months ago, so that has definitely been correlating well with growth. Last labs on May 30th showed it was still up there. The platelets dropped from the 300's to the 250's since starting Remicade. What are platelets and what does the lab value mean?

I couldn't see it, but I think the GI was looking at a trend over time graph on the computer when he was making all his comments. Over the years, yes, platelets have dropped, but over the last 6 months, they've been pretty steady... and normal. When are GI's going to realize they shouldn't think out loud? It drives moms insane.

I'll call for an endo appt tomorrow. DS is going to want to know all the details and if anything painful is involved. What can I tell him?

GI was also still concerned about anxiety. Obviously he's seeing something that I'm not. I know he gets anxious about anything and everything medical and that's the only setting the GI sees him in, but otherwise, he's a pretty normal teenager. I just found a local therapist who deals with chronically ill kids and gave her a call. I'm hoping she'll be able to get him in.
 
Visual inspection of their bits and pieces. Mostly questions about family height and start of puberty for mom and dad. We did blood tests to check for anything of and to decide if further testing was needed.
 
A therapist has really helped my daughter who tends to be a little anxious. Ours is actually part of the IBD clinic which has been a big help, since she knows all the issues that go with IBD.
Good luck with the endocrinologist! Glad to hear your son is already growing!
 
GH deficiency and hypothyroidism the common hormonal causes of poor growth cause a delayed bone age and your son's bone age is not delayed; it's equal to his chronologic age.

Is it his pubertal growth spurt that you are observing? Does he seem to be in mid or late puberty?

Why is your doctor saying something now and not before? It's a good question.
Did you ask?
 
Honestly, I think the growth issue came up today only because there wasn't much else to talk about. That, and based on my height of 5'2" and my husbands of 6' he should be at the 50th percentile right now, but he's at the 10th. I was just reading an article that Johnny's mom shared in another thread about catch up growth and now I'm really not concerned at all. I think he's going to be doing a lot of growing this summer. Just a feeling.

As far as puberty, it started late last year. Hair down there, facial hair, and voice changes, but no under arm hair yet. Just guessing, I'd say he's about nine months in to puberty. So, early to mid puberty?

My gut is saying he's fine in terms of growth and many here have said it can take a year on Remi before growth really takes off and/or catches up. After chatting with the Hubster, DS seems to be following a similar puberty path as him.

Still thinking I will call Endo tomorrow. Sounds like we can get some good info on various things even with just a quick consult.
 
My daughter doesn't have Crohns, but she does have an autoimmune disorder that affects her platelets. When she was diagnosed, her platelet count was only 4,000. Needless to say she was in critical condition. We were in and out of hospitals for 4 1/2 years before she went into remission. Today she is 23 & is still in remission. When she gets sick, her counts drop, but pick back up on their own. I am surprised that the dr was concerned with a platelet count of 235,000 since that is still in the normal range. It does fluctuate some, especially when one is sick. Since it is necessary to be normal if surgery is performed (blood clotting), I can see keeping an eye on it. But I am curious about the concern...keep us updated!
 
My Daughter's normal since starting remicade has been 212- 235. According to Doc is good. Normal range is 150 to 450. Low blood Platelet is called Thombocytopenia, reduction may be due to viral infections, toxic chemicals, chemotherapy drugs, alchol consumption etc. etc. Usually they should check for platelets number every remicade infusion along with ALT AST. Those are the tests GI is most interested at every infusion.
 
When S was flaring, at dx, his were in the high 400s, and up to 543. But, once inflammation came under control (first with EN, then remicade), his platelets have been steadily dropping, to recent levels of 230-240 (and they've been in this range for the past 18 mos). Our normal range is 150-400.

There was a bit of drop after starting remicade but, hard to say if it was related as the levels had been steadily dropping for two years already.
 
Due to a cancellation, we got an endo appt for Monday, otherwise it's a three month wait!

Okay, so lots of talking, a look at the privates (he's not going to be happy - it's a female dr) and possibly blood work. Anything else?
 
That was pretty much it for our first appt. We did the labs which showed at the time he might have low growth hormone so he wanted to do further testing but Jack had just started remicade so I wanted to wait till our follow up in April at which time Jack was 9th-10th on the height and he thought based on his age and not being very far along into puberty we should do more testing which as you know came back in low end of normal range. That testing involved having IV port put in and blood taken at 1/2 intervals. No eating for 8 hours before hand so fasting level drawn then the give you a shot of a protein (arginine or something like that) and draw every 1/2 hour about 2 hours in he was given a shot of glucagen on then I think we had an hour before next blood draw. It's supposed to be a 4 1/2 hour deal but we were there a little longer because Jack's blood sugar went too low and he had to stay and drink apple juice and eat graham crackers until it went back up.
 
Johnny just had a normal blood test for his appointment, but his growth hormone was very high. I would assume if the growth hormone is what they expect it to be for his stage of puberty he won't need any special blood draws. They do look at the testicles but it was quick and just as they did at Johnny's last pediatrician appointment. They need to measure the size as it is the most accurate way to know what stage of puberty he is in. Then they sent us for a hand X-ray for his bone age, but it sounds like you have done that.

Just for reference that Alk phos is really high:) Johnny's last year ran from April 2013-April 2014 260,325,330,267,287 and he grew 5 inches in that time frame. His numbers would start to ramp up in April and then dipped to 267 in December and went back up to 287 this April. I don't know the amount of growth in relation to Alk phos differ from child to child but hopefully you will see some major changes!!

I would still want to see the endo though, that's just me I am anal and a need to know type person.
 
Well, now I'm not feeling good about this anymore.

We saw the Endo today. She clarified that the reason we were sent to see her was because DS is at the 10th percentile for height and should be at the 50th based on parental height. I asked if that was a standard for normally healthy children, not those who've been sick half of their lives, and she said yes. He did jump from the 5th to 10th percentiles since being in remission 7 months ago, so she thinks he's doing the classic "catch up" growth that is seen in cases like ours. We're hoping he'll continue to jump percentiles over the next year. If he can get up to the 50th soon, then we're looking at 5"10". If he continues on the 10th percentile, then we're talking 5'6", which for some reason I'm having a hard time with. I could tell this was an eye opener for DS as well.

Upon physical exam, all is good. She determined he's between stages 3 and 4 in the 5 stage puberty process. TSH and T4 have come back normal and low normal, respectively. The other two tests... insulin something or other and the IGFBP-3 are still pending.

She said that unless the labs came back abnormal, we'd likely not do anything. I've been reading about growth hormone shots though and how it can add 3" in short stature kids (which I think is where he's falling). I can't remember the details, but I thought I also read something awhile back - maybe it was here - saying growth hormones are not a good idea for IBD kids. Is this ringing any bells for anyone?

And... just a minor vent. This was the 5th doctor appt between my two kids in one week's time. I am SO done with doctors, waiting rooms, and driving to the hospital right now. Remind me to spread this all out over the summer next year.
 
Did the endocrinologist give a predicted height based on the bone age xray that he recently had done?

And that he should be at the 50th% is misleading. If you had 100 boys, your average boy would be at the 50th% but some of your normal boys might end up with a height that was 8.5 cm (3+inches) above or below the 50th percentile as adults. http://medcalc3000.com/HeightPotential.htm (When one parent is tall and one parent is short, midparental height is a less useful predictor.)
 
^^^^ Ditto. I thought all would be good when we followed up with endo in April and Jack is/was 10-12th. Should be about 75th based on parental and pre-dx's growth pattern. He did come back low in one area which is why we did the additional testing for growth hormone. Only one reading over the 4 hour period needs to come in at normal range for him to be considered normal and while one came back right on the line. They said same thing it should be a year of catch up. I keep telling myself he will most likely grow past 18 so if I keep in mind his bone age is nearly 2 years behind and he is almost exactly in line with his brother who is 13.

So Jack's medical chart lists him under conditions as having short stature.

I think what I remember about the shots is that it only can give a few inches of height if you choose to do them and the tests for the growth hormone can give a false negative.
 
The tests for GH give false positives more commonly (appear GH deficient but not deficient) than false negatives.
 
Yes, thank you for correcting that is what I meant I was trying to remember what you had told me when Jack was going through all this but basically it could show they need it when they really don't
 
xmdmom - She said she needed to plug all the info collected from today into her computer model and would tell me the results in her final report. I'm guessing I won't see the report until next week. She did hint that since his bone X-ray was the same as his age, that he might be taking after my side of the family. Great. :(

JM - Our previous GI was always telling me not to worry about growth because with the undiagnosed Celiac for two + years, it would tack itself on at the end. Other boys would be done growing at 18 but DS would keep going. He once told me I could almost take the growth chart and slide the age scale over 1-2 years for a more accurate prediction of how he'd grow. I wish!
 
Yes Mehita...we were told that the further behind the bone age from chronological age the more "catching up" time the child had. O had a bone age done and it was right at her chronological age. Based on everything in front of them we were told we would be lucky if she squeaked out 5'4" which is average. Well, I am here to tell you that at our last GI appointment she was 5' 6" and looked a little down at me. THey don't know everything. They are making their best estimates.

My younger one has precocious puberty (matured super early) and once she got her period we were told she would stop growing. She did. The doc discouraged us from any of the hormone treatment at the time. Either to stop menstruation and also to encourage growth once she stopped. It is kind of funny...She was ginormous in elementary school but in high school she will be the smallest. FYI my mother gre 6 inches after she started her period so again...they don't know everything. But I know it is easier for girls to take than boys. :ghug:
 
What percentile was DS at before diagnosis? (when healthy) My guess is the mid-parental height is not the only indicator they are looking at to estimate his height should be at the 50th percentile. If he was floating along at the 50th before he was sick and is now in the 10th then the goal is to get him back to the 50th. From what I have read about catch up growth you don't necessarily have a younger bone age and therefore a longer period of growth, during a normal year where a growth spurt would have been 4 inches, it is now 6 and there are gains made over several years. Johnny's bone age was the same as his age too, but he definitely has jumped percentiles since last year. He just grew more that they expected. The height that they estimated for Johnny did not take into account any catch up growth.

In our experience the Endocrinologists try to prepare you for the worst, and make the assumption that it is possible that DS will not remain in remission during the rest of his years of growth. As our endo said to us, there are a lot of variables that make our son's case out of the scope of the normal experience so making a prediction is difficult. If you really want to explore growth hormone, I would ask about it. One benefit is that it will kick his growth spurt into gear, so if he does at some point go into a flare he has that growth behind him. Maybe if the fecal cal comes back normal then you know you have time and can wait? Studies show that a normal fecal cal is consistent with at least 12 months of remission.

Also, I have read a few articles about how growth hormone is used to treat crohn's. This is one article
www.ncbi.nlm.nih.gov/pmc/articles/PMC2910806/

I am glad you are getting some answers and I hope you get some good news on the rest of the results and see some growth very soon!
 
Also think they should be able to get back to their curve( pre dx).
Both for height and weight if all is going well.
DS moved from 75% for height to the 25% just prior to dx.
He is now about the 70% for height so slowly getting there after two years on biologics almost .
Good luck
 
I love you guys! You're making me feel better again with all your experiences and knowledge.

Around 6 is when we started noting in his medical file that something might be up with growth. At age 8 is when we first saw gastrointestinal symptoms and age 8 1/2 was when he was diagnosed. That is when I found out he'd been having diarrhea for years. He thought that was how everyone pooped. I think the undiagnosed Celiac played a huge role between ages 5-8. Soooo... to answer the question of his pre-dx %'s, I'm going with those at age 5. Does that seem right to you?

Age 3, 76% height, 87% weight
Age 5, 47% height, 61% weight
Age 7, 28% height, 35% weight (Um, Houston, we have a problem).
Age 8.5 (dx) 6% height, 30% weight
 
Typical kids figure out their own curve by age 2.
Before that they tend to bounce around- hence why growth charts start at 2-20.
Given he was sick between 5-8 age 3-4 might be a better fit
At least something to ask the endo about.
Does the endo have all of his growth charts .
 
Endo only has his growth charts from age 11 onward when we started at the University hospital. I'll call her tomorrow.
 
Mehita don't lose hope! Weirdly enough M has grown half an inch in the last six months (which isn't a lot but it is when you're 5'2). We're completely confused about why she grew (in fact the nurse measured her 4 times) because she's not even in "deep" remission anymore and she hasn't grown for 3+ years so we assumed she was done growing.
Good luck!
 
I would get his growth charts from the ped sent over .
More than a few second opinOns required this for DS.
 
Looks like my first post didn't go through :ymad:

Hormone level tests are coming back normal. Woohoo! The igf protein binding 3 was 5.3 with a normal range of 3.3-10.3.

One test tho, the igf protein 3 sd, just said neg followed by 0.8 with no range. Anyone know what that might mean? The difference between this one and the one above only seems to be the letters SD after it. Any ideas?
 
Mehita said:
The platelets dropped from the 300's to the 250's since starting Remicade. What are platelets and what does the lab value mean?

I couldn't see it, but I think the GI was looking at a trend over time graph on the computer when he was making all his comments. Over the years, yes, platelets have dropped, but over the last 6 months, they've been pretty steady... and normal. When are GI's going to realize they shouldn't think out loud? It drives moms insane.
Click to expand...

Platelets are the blood cells responsible for clotting the blood.
So a high platelet count in someone with IBD may correlate with active bleeding or surgery as the body will produce more platelets to deal with the issue at hand.
A low platelet count may lead to symptoms of bleeding, bruising and the like.

The lab value is telling you what the normal range is and your lad is well within that range. Remicade does have the potential to reduce the platelet count and perhaps he will now plateau out at that new lower level. Whilst ever it remains steady, is in the normal reference range, he is being monitored and he has no symptoms of a low count I wouldn’t worry about it. :ghug:

Dusty. xxx
 
My mother-in-law sent me an email the other day saying that the Hubster at age 14 was two inches taller, yet 3 pounds lighter than what DS is right now at age 14. Had I known this before, it sure would have saved me a ton of worry and research.

The last of the labs finally came back and they were all normal.

So... we just sit and wait for him to follow what seems to be his natural path of growth.

Thanks for all the input, everyone. I really appreciate it.
 

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