Endocrinologist - Delayed Puberty an Update

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Jmrogers4

Jmrogers4

Joined
Jun 5, 2012
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Had our follow up visit to the endocrinologist from our December 31st visit where we decided to wait for further testing in the hopes that remicade would do the trick and kick start things. Well he is doing fabulously well on remicade and everybody is pleased with his weight but.... even though he has grown an inch in the last 4 months he is know even further down on the growth chart. So since he initially showed low level of human growth hormone he would like to do further testing as he hasn't moved any further along on the puberty level either. Jack will be 15 in July and he feels if there is something else going on we need to be on top of it now!

He says it usually takes a couple of months to get in to do the testing but based on Jack's age he is going to try and move some people around and get us in ASAP!

So it is a 4 hour blood draw test. They put in an IV and take a fasting glucose level, then a shot of some kind of protein and draw I think it was 4 more times over the next couple of hours, then a shot of glucagen and draw a few more times over the next couple of hours at least that is what I think I remember... If that shows low levels, they will do an MRI of pituitary gland and commence 7 days of HGH shots.

Anyone else with experience? Anything I'm missing or should know or ask?
 
:ghug:.. I know how hard all the testing is.

I don't know if this would be helpful in your situation but my daughter had a 24 hour urine test that checked her hormone levels. Apparently the levels can fluctuate during the day and this test gives them an overall idea of how many hormones are released for 24hrs. Might be worth asking about???

Good luck
 
Thanks Catherine, was that test for growth hormones? So looking at original blood tests it looks like Insulin Like Growth factor was low normal range 236-622 ng/ml and he is at 214. There is also a Z-Score (Male) that was flagged and just says see note. Of course I don't have a copy of these just looking at his online chart. Guess I didn't really worry because I thought the remicade would fix everything. Will make a phone call and see if they can send them to me.
So medical conditions on his chart are listed as Crohn's disease and Short Stature
Children with growth hormone deficiency have a slow or flat rate of growth, usually less than 2 inches per year. The slow growth may not appear until a child is 2 or 3 years old.

The child will be much shorter than most or all children of the same age and gender.

Children with growth hormone deficiency still have normal body proportions, as well as normal intelligence. However, their face often appears younger than children of the same age. They may also have a chubby body build.

In older children, puberty may come late or may not come at all, depending on the cause.
Click to expand...
Many people mistake Jack as being around 10-11.
So 7/23/12 height 4'll"; 7/9/13 5'1"; 12/9/13 5'2" and yesterday 5'3". He was 4'11" at diagnosis in 2010
 
Our sons are pretty close in age in size. My son will be 16 in September and is 5'3", 115 pounds.

My son had that test done a few years ago. He actually slept through most of it. It was pretty easy, just long and boring.

When he had the testing done the growth hormone level came back low-normal and his IGF-1 was low. He was -0.1 on the growth chart the insurance uses but they require -0.3 so he didn't meet the requirement for them to cover growth hormones so he didn't start it.

He's grown a lot since having surgery. He's still low on the growth charts but at least he is closer in size to his friends now.
 
Oh yet another thing to consider, insurance I hadn't even thought of that..
I don't think it's so much his size that bothers him although he wishes he was taller. I think it is more the "maturity look" kwim. As there are other kids who are close to his height but look their age or you can tell they are 15-16. They are forever handing him kid's cups and bringing him kid's menus at restaurants and that is what really bothers him.
How's the puberty Tink? Did that take a while, did it coincide with his growth after surgery?
 
I hope the test goes well for him. I know the struggle about growth is hard. Long before C was dx'ed with CD he was the smallest his age. I remember he was the only 6th grader to make the baseball team and none of the uniforms fit him. The crotch of the pants hung to his knees! He would run out on the field(2nd base) with the rest of starters and he literally looked like the kid brother/bat boy to all the other players!

That was at 12 and now at 17 he is a bit over 5'7" and is 132. I'm really hoping that the EN will give him the nutrition he needs to grow. He hit puberty about the time he was supposed maybe a little late. And think the GI would see no concerns now that his weight is up but I still think he should be taller based on the heights of his father me and his sister.

I hope the test goes well and you can get some answers as well as whatever is needed for Jack.

Glad he is doing well on the remi! Woohoo!
 
Jmrogers4 said:
Oh yet another thing to consider, insurance I hadn't even thought of that..
I don't think it's so much his size that bothers him although he wishes he was taller. I think it is more the "maturity look" kwim. As there are other kids who are close to his height but look their age or you can tell they are 15-16. They are forever handing him kid's cups and bringing him kid's menus at restaurants and that is what really bothers him.
How's the puberty Tink? Did that take a while, did it coincide with his growth after surgery?
Click to expand...

Puberty definitely coincided with surgery. It was really quick--like a few months after surgery--and came on strong! He also started looking older and mature around that time. His surgery was a month before he turned 14.
 
The endocrinologist did blood tests first that attached on to our usual GI labs. They checked testosterone and some other things to determine if the more extensive tests needed to be done. My son didn't need growth hormone shots. Is your Son's inflammation all normal being on Remicade? I ask because we went a year and half of Humira with totally normal CRP levels. (But sometimes his SED was around 14 ... then 11.. then 14....etc) was But no growth. So now the GI's all think he had a little inflammation that wasn't be seen clearly on Labs. (Our old GI didn't ever do a colonoscopy to see healing) Our new GI along with our Mayo GI says they always do coloscopy to make sure the intestines are doing what the labs say. Sorry if you posted this kind of info already! :)
 
So Blood tests done on 12/31 for Endocrinologist - It was determined at that time that he was a little low on a few results but we had just had our first dose of remicade in January and were hoping that would jump start everything... His highest ESR has been 10 so bloods unfortunately for us don't correlate to disease activity. But last ESR number have been 6 so yes they have dropped. So while we think that there was some level of inflammation in the past that was causing some of the growth issues, now we're not sure if that is the whole picture.
 
Is he on the chart for his bone age? That's my son, also low growth hormone, but Endo is wait and see, but he's still only 12 (10 bone age). Sounds like a lot to go through, hope it goes well and keep us posted
 
He is bone age 13. I think it's because of his age and our window is shrinking. Of course I'm stressing about them calling and getting it scheduled. Last day of school is May 23rd and infusion is on May 28th. Not sure if remicade would affect anything in testing and it would be better to do it before
 
GH testing is not terribly reliable especially in teenagers with delayed puberty. (BTW, Where is he in puberty?)There can be false positives (meaning that there is GH deficiency when there isn't). How did he grow before the Crohn's? By that I mean on what percentile was he growing. In reality, the growth curve and exam are often the most telling.

It's most likely that "he's further down" on the growth curve because other boys are further along in puberty and experiencing their pubertal growth spurt. In healthy boys, a bone age of 13 suggests 87%-88% of total height has been achieved.

Low IGF-1 is commonly seen with poor nutrition, and Igf-1 is generally lower in prepuberty and early puberty vs mid and late puberty.
 
Was he 90% at age 10 at dx? Based on 4'11" at age 10.
We go on DS 'a curve from age 2 on.
We actually watched his growth cross two percentile lines just prior to dx and flat line .
He is now almost back to his original curve .

Good luck on the test
 
That sounds about right I think he was closer to 85% based on an age of 10 years 7 months at diagnosis now it's 12th-13th. Brother is 82% based on well child check up we just had. I'm not even sure what I'm hoping for in regards to the test, that he is low and we need to do growth shots or that there is nothing and this is just what it is...
 
He was between 75-80 th before crohns and his brother seems to be following along same line he is 77th, he is very early stage 4 according to endo. His brother who turned 13 last week is leaps and bounds beyond him. Voice changed, lots of hair, muscular, skeletal changes. Passed me in height. Neither myself nor his father were late bloomers
Wrote this out on my phone before last post but didn't hit send
 
Well growth failure (medical term) is quite common in Crohn's disease. He clearly crossed a bunch of percentiles but it sounds like it began with his Crohn's diagnosis/symptoms . Is that accurate?

How well has his Crohn's beencontrolled since diagnosis-- has he had symptoms, anemia, low BMI? If he has had symptoms/anemia/or low BMI for much of the time since diagnosis, I would think the Crohn's was the likely cause of the growth failure. If he has been generally well, I guess you'd have to consider other causes.

(BTW, Boys have 2 Tanner stages (testicular and pubic hair)- It is the testicular stage that correlates with muscles/growth spurt. )

What was his height when he had the BA of 13? You need that to predict a final height.
 
I'm tired .. What is BA (bad ass).
As for Crohn's we thought it had been well controlled. He had low BMI for many years pretty much up until last year. he was in 1st percentile for BMI. He weighed 75-77lbs from time of diagnosis until March of last year. He is currently about 28th percentile for BMI.
Yes after initial appointment which was about 2 weeks before 1st remicade dosage. His blood tests showed low levels for growth hormone and he wanted to do testing at that point but I asked if we could wait since we had seen immediate weight gain with remicade so I was thinking that maybe it was disease activity this whole time. Even though scopes Feb 13 were clean all labs were normal including FC. He has grown an inch since 12/31.
 
Just wanted to wish you luck for the test. Hope it goes well! I struggle to know what's best to do. My son hasn't really grown in the last year or so, his friends are shooting up, but then there are kids without Crohns that are smaller than him in his year at school. Hard to know what's normal and what's not.
 
Ugh! So true Sascot. My younger daughter has endo issues but the other way...grew/matured too fast so while she was ginormous all along she will be the shortest one in middle/high school. I guess I could have given her drugs to slow her down but....

FWIW JM - O was on Remicade a good long while before we saw lots of good growth and weight gain. I think growth is the last thing to fall into place once you get inflammation under control. She did grow just not the growing machine she is now. Just last summer she started growing and that was a full year after being declared in clinical remission. She is still growing and gaining like crazy but puberty also kicked in so maybe this is as simple as just a waiting game.....hoping anyway.
 
BA 13 he was 5'2" this was just done in January.
CIC, I think you have hit the nail on the head. Do we just need to wait? Am I putting him through unnecessary tests but endo thinks we need to do additional testing based on blood tests from initial appointment and evaluations done at that time and now.
He asked Jack (not me) what he wanted to do and Jack said he wanted to do the tests. I think it effects him much more then he lets on. Jack asked a lot of questions, wanted to know what they were looking for with blood tests and asked what treatment options were. He explained everything to him and then asked him if he wanted to do the tests because he could choose to do nothing and just wait and Jack told him he wanted to move forward (didn't even look at me to see if I agreed/disagreed or even had an opinion). It was a proud mama moment but also made me realize even though he may look young he is growing up.
 
That BA and height seem to predict a height of 5 10' which is fine, normal, average..(Of course that assumes a normal pubertal growth spurt. )... I would feel reasonably optimistic with the 1 inch in the last 4 months. You could ask the endocrinologist, what s/he predicts for a final height, and if the latest growth seems to go against GH deficiency.

The testing itself is expensive-- you should ask how much it will be if expense is a consideration.Is waiting 3 or 4 months and rechecking his growth rate an option? I'm certainly not advising you here.

BTW, what is your height and your spouse's height?
 
I'm just a titch below 5'5" and hubby is 6'1". For him I don't think it's the height. He would most likely be fine at 5'6", 5'10" or even 6". It's more the puberty thing when he isn't even as far along as his younger brother.
I was optimistic about the 1" growth, we're usually 1" a year! I was fully going in expecting him to say everything is fine we don't need to see you again. So growth chart shows him dropping percentiles each time.
Luckily we have met all deductible for the year however my year starts over in August, so I guess if we are going to do it before then would be better. I'm still not sure about it but then there is that little nagging voice in the back of my head saying "what if there is something wrong and you didn't do anything about it when you could have" kwim?
 
Take a look here http://www.cmrinstitute.org/nni/content/module1/groups/12.html
Look at graph on right. Note that the boys growth spurt is starting at 13 . Even though his chronologic age is older, his bone age is close to 13. The uptick in growth may be the beginning of the growth spurt.

You mentioned neither you nor your husband had delayed puberty but Crohn's is a common delayer of puberty.

I hear your worry. You could just do the testing or you could ask some more questions ( I would ask the doctor what do you think is the likely cause of his growth issue. Do you think there is a problem with his puberty? (T4 would suggest that there isn't). Is there something terrible that we might miss if we wait and watch a bit? And what is the likelihood of that? What do you predict his final height to be? I'd also ask how much more height could he hope to get with GH treatment? You might be surprised at the amount. ). The only downside to the testing is that sometimes it gives false positives and people w/o GH deficiiency are treated.

I truly hope my commentary isn't making this more difficult for you.

In terms of the puberty, it sounds like he has started puberty. According to the doctor he's a 4-- but that doesn't sound like what you are describing so I'm confused. You can google Tanner 4 and see pictures and see if you think that's right. It goes by pubic hair distribution and testicle and penis size.

All this is no fun. Wish there was a crystal ball to see the future.


Sending "hugs"!
 
Oh you don't know how much I appreciate your comments!! He has been at the same stage for the last 2 years, he just seems stalled there. A few hairs etc. I do think it is most likely Crohn's has been the cause of it all combined with lack of nutrition, His BMI was so low.
It's hard because we can't help but compare to his younger brother who turned 13 last week so we figure the are physically the same age and whose voice is really changing it now way deeper more often than not, lots of "hair" even the hair on his legs looks manly now and in the same 4 months has grown 3 inches. I know I shouldn't compare but it's really hard not to.
He gave his final height a prediction of 5'9" to 6'2" (seemed like a pretty big range to me). So doing all the prediction methods out there before disease hit you know based on height/age/weight/parent's height. It was 6' and his brother always ended up the same.
I'm going to email the endo office and see if I can get those questions answered.
He did say it could take up to 2 months to get testing scheduled so maybe I'll ask about if xyz happen before testing then can we cancel. Who knows maybe that voice will start changing and he shoot up several more inches over the next couple of months (I hope)
 
Jacqui - for what it is worth my son didn't really start going through puberty until he was 16. He was "growing" but the whole baby face, lack of facial (or other) hair, etc., came later than all of his Non-IBD friends... Now he's got a little facial hair (but we are not hairy people so I've told him not to expect much more), "other hair" - which for whatever reason he was happy about... and everything has become more man-like.

We just had his annual physical (for age 17) and he's 5'10" and 143 lbs. I would love to see him put on more weight but his doctor is pleased.
 
I say if it makes Jack feel better go ahead with the testing...it couldn't hurt. It gives you more info and will set everyone's mind at ease. XMDmom's caveat of testing and coming up low and receiving GH when you in fact didn't need it was good info...I hadn't heard that but then again my younger daughter's problem wasn't not growing it was growing and maturing too fast.

I hear ya on the differences. O's sister got her period when she was 9 and she looked older than O and O is 4 years older than her! O's older sister also hit puberty on the young side. I definitely think O's CD affected her and you have a good point in the low BMI. As a matter of fact, O didn't really start maturing until she got to the 5th percentile in BMI and then holy hormones batman!

BTW - O's docs said that she would hit 5' 4" max...she is now 5'6"!
 
Thanks, I think we will have the test since we have met all deductibles at this point and if we wait a few more months I would then have deductibles to meet again, may as well do it and if it does come back low then....? but I'm hoping it does not and it's just a matter of waiting. As you all know waiting for anything is not my strong suit. Medicine to work, doctors to call back. I have no patience, just fix it....
 
When did he start remicade jan 2014 or jan 2013?
I would still do the test since it can only give you more data to make a decision on.
 
Your siggy says 01/09/13 so I was confused.
4 months is nothing on remicade .
It took DS close to a year .
Weight first
Then growth
 
We are dealing with the same issues. Max was in the 90 percentile before Crohn's (age 8) and now he's in the10th,he'll be 14 next month.I also thought Remicade would take care of it(we have now moved on to Humira) His broher is 12 and is now quite a bit taller.Neither one has armpit hair etc.Our doctor says that as long as he's still on the growth chart, we're good. And as long as there is some growth ,not to worry. Well,I do worry,but have decided to enjoy that at least he's feeling good right now,I just want to enjoy that for a while before starting to worry again.Anyway,like Max says, intelligence is not measured by height. Good luck and please keep us updated.
 
Max is a smart boy! Yes I was always worried as well and they kept telling me not to worry until all of the sudden it was "I'm concerned about his lack of growth I was looking at his growth chart" Honestly I think it was more the appointment before where I was talking about high school and him getting ready to take drivers training in the summer, that the GI was a little shocked to realize how old Jack was I think he was still thinking of him as the 10 year old he first saw (Um No, it's been 4 years).
I don't know if anything will come of it and we seem to be in a really good place thanks to the remicade but then I figured it wouldn't hurt to have more info.
Sounds like the age difference is pretty similar between our kids. Mine our 21 months apart for a long time people thought they were twins but recently they have been asking if James (my younger son) is the oldest. It's just hard on a fragile male teenage ego.
 
Thanks I'm going to check for android version and let you know. I rarely pull out my first version of ipad anymore as I can't even download so many apps anymore because I can not update the operating system to the latest and greatest.
 
Honestly I think it was more the appointment before where I was talking about high school and him getting ready to take drivers training in the summer, that the GI was a little shocked to realize how old Jack was I think he was still thinking of him as the 10 year old he first saw (Um No, it's been 4 years).
Click to expand...

I think it was similar with C's weight, the remi nurse freaked out about how skinny C looked and scheduled him to see the GI, at that appt I mention C being only a year away from graduation and that is when I think it was that the GI saw a 17.5 year old in front of him instead of the just turned 15 year old he was at dx. Then the growth concern came into play and soon after a new flare and shortly later the spondylitis dx... Solidyifying the old adage.....it comes in 3s.

I know Jack has had some time on remicade but I think it may still come around in the growth/puberty dept. I have my fingers crossed that things will get going soon!

There was a boy on the same schedule of remi as C and so they always talked during infusion, for the first 9 mos they were about the same height/build and age, the only difference was C looked as if he had gone through puberty and the other boy had not...but our last remi it was so noticeable that the other boy's growth/puberty had taken off. It was wild the difference and the Dad was so ecstatic talking about it in the waiting room.
 
the only difference was C looked as if he had gone through puberty and the other boy had not...but our last remi it was so noticeable that the other boy's growth/puberty had taken off. It was wild the difference and the Dad was so ecstatic talking about it in the waiting room.
Click to expand...
That is my hope Clash and I'm really building my bubble on that. Only 3.5 more weeks until next infusion, only 3 more weeks of school and 2 months until he starts drivers ed :eek:
 
Tests are scheduled for Monday. The only days I was given to choose from was Monday or same day as his infusion and I didn't think that would be a good idea.
I really think everything is going to be okay he does seem to be growing and I think it's just going to take him a while to catch up but I guess I need the reassurance this will provide since we have worried about his growth for so many years.
My bubble is quite comfortable right now!
 
Glad it's scheduled information is always good to have .
I am in the bubble right now with sunglasses on .
I can lend you a pair .
Things look better with the glasses ;)
 
Dark
Since dark glasses make it harder to see the "little things "- that way you don't have to worry :)
 
I think it is good you are moving forward with the tests even if for only info purposes.

Can I get some of those glasses?
 
I think we need a bulk purchase on the sunglasses :headbang:
clipart-yellow-sunglasses-smiley-emoticon-512x512-795b.png
 
glasses all around for my bubble dwelling buds! :wine:

What?! THose aren't the glasses you are talking about? Well they do alter vision....
 
Thank God for CIC and her rosé coloured glasses! :thumright:

Jacqui - good luck at apptmt!!! Guess we'll be at appointments at the same time... should we skype each other in? :)
 
Just heard they are now offering group skype for free. Sounds like a plan. I'm sure his doctors think I'm a bit of a control freak- Nope just want what I want when I want it and call me back quickly, don't sit on test results for a day or more. Maybe I should be bringing them a bottle of wine.. Here you go have a drink... and now for my list of questions :tongue:
 
Appointment went well today but long.... checked in at 8:10 and left at 2:20. He was fine until last 1 1/2 when glucagen made him throw up and then when he stood up to use the restroom he about passed out, glad I was standing right there to catch him because he just crumpled. His glucose level was 80. We should get results in about 2 weeks.
 
Poor kid, hope he's feeling better by now. Sorry if I've missed it but what results will they be looking for, ie what might the plan be given the results?
 
He has been asleep since about an hour after we got home. Hubby just asked if we should wake him for dinner. Looking for levels of growth hormone, preliminary testing showed him low. If he is low it is 7 days of growth hormone shots to jump start his system is my understanding.
 
She hasn't been on in ages but I remember one of Crohn's Mom 's sons was taking injections for growth. But, his was an ongoing treatment, not just 7 days... I'm pretty sure I remember her mentioning something about him learning to give himself the shots. If you search up some of her posts, you may find some info on it. :)
 
Poor fellow, I hope he is feeling better now. How long until the results are back? Do they give you a goal of where they want him to be from taking theses shots or do they test until levels are where they want them?
 
Results back in 2 weeks. I'm sticking my head in the sand and have convinced myself we will not need to do shots and he was delayed due to disease activity and any day now we are going to wake up and find him in full blown puberty and have grown like 5" over night.
But if they do come back low. I have some time to cram in a bunch of research since he will have to have MRI of pituitary gland before starting the shots.
He went to school today as he only has 5 full days left and 3 half days. He said he felt fine. He woke up for about 2 hours last night at some food and went back to bed and fell right back asleep. He was pretty funny this morning saying I don't know why I was so tired yesterday I just had to sit there all day. Umm could be the couple vials of blood they pulled every 1/2 hour for 4 1/2 hours yesterday while your blood sugar was all over the place.
She hasn't been on in ages but I remember one of Crohn's Mom 's sons was taking injections for growth. But, his was an ongoing treatment, not just 7 days... I'm pretty sure I remember her mentioning something about him learning to give himself the shots. If you search up some of her posts, you may find some info on it.
Click to expand...
I think I remember this as well and yes Jack would give himself the shots if we get to that point, he and the endo had a long talk about it but I think I will search that thread out.
 
My nephew, now 15, did the shots for about a year and a half. The shots themselves were no big deal, teeny tiny needles. What my sister always struggled with is remembering to bring the meds when not home and keeping the meds chilled. That and insurance. The shots are pretty expensive.

Overall, it did kick start puberty, his voice changed and he grew about five inches. He didn't gain any weight though so now while he looks more like a teenager, he's stick thin. They estimated that he will be around 5'7" and he's probably 5'5" now.

If I recall, you said your insurance renews in August. You might want to check into coverage on the shots. I think my sister said it was $1000/mo out of pocket.
 
Tests back and as I expected they are in the lower end of normal but in normal range. So July is 6 month mark for remicade and also his 15th birthday. I'm figuring (hoping) for growth and everything else to really speed up this summer.
Last week of school this week and he is stressed about finals this week and next week is infusion so a good long summer of relaxing and growing is in order, I think.
Thank you everyone for the information and support and I feel better that things are going to progress and there is nothing holding him back now that we seem to finally have gotten the Crohn's under control.
 
I hope the summer break brings plenty of relaxation and growth! Glad to hear tests came out good and no further investigation needed! Hope he has a great summer!
 
Glad he was in the "normal" range! My husband (who does not have IBD but does have allergies/asthma) was an extremely late bloomer! At his high school graduation (he was 18) he was only 5'8" and looked like a 12 year old. No body hair of any kind. He refused to wear shorts because the other kids would tease him! He is now 6'3" and of course has body hair, lol. Some kids just take a little longer than others to mature and grow.
 
I'm glad for the good news.
My brother was a late bloomer also, I went to his room one day to yell at him for something (I'm sure he deserved it) and he stepped out and he looked down his nose and said, can I help you:eek2: my reply....no sir I was just making sure you were alright.:rof:


:hug:
May your boy grow and grow and call his mom short some day. :lol:
 
Hi JM- I have experience with this test. I have 3 kids, all small with very delayed bone age, otherwise healthy except that my middle may have Crohn's. She is under the care of a peds GI, all 3 go to a peds Endocrinologist.

My oldest (14 year old girl) went though this test with the IV for 3 hours in the hospital. It was not uncomfortable for her, even with the IV and shots. It was MUCH better than what my middle went through with her colonoscopy/endoscopy. Her tests showed a significant lack of HGH in her system. We then had to get a head MRI to make sure there were no pituitary or other issues.

She went on the HGH shots daily in mid-November 2013. She has since grown over 2 inches in 5 months- and this is a kid who grew almost nothing last year. She clearly really needed the drug. She gives herself the shots and has 0 side effects. It has been a wonder drug for us! She is finally over 5' tall, (my husband and I are 6' and 5'5"). My other 2 kids are also going to have this test done in a few weeks I expect they will also need HGH, which I will gladly give them. The insurance pays for it if the tests come back indicating a deficiency.

Sorry for the novel- but hope this helps!
 

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