Growth in CD kids

[momoftwinboys]

Hi there
:sign0085:
I would like to take Patricia56 up on her offer re growth on farm girls thread. Welcome to the group.:welcome::welcome:
We had the boys appointments yesterday.
H, CD dx twin, is doing pretty good and is growing but velocity has not increased. Since he has identical twin, they have a pretty good idea of where he should be. They turned 11 recently, and the results of bone age scan done yesterday show bone age between 9 and 10. Talked about adding some blood tests re growth with next labs.

Does anyone have info on what to expect and what we hope the tests will show?
Thanks

 

[Clash]

My son is scheduled to have a bone age study this fall. I was wondering if anyone had been given the explanation his GI gave us. He said that although it is common to see growth retardation or growth failure in CD kids there was sometimes a small silver lining in the fact that their bone age also gets stunted so although he may be 15 his bone age may be 2-3 years younger giving him a larger window for catch up if we can get his CD under control. Anyone else been told that? Please update as you go through this process Momoftwinboys!! Thanks.

 

[Tenacity]

I was also told that there could be a larger window of growing, but this is not always the case. If you have not initiated growth hormone therapy before their growth plates have fused, it will be too late.

I learned a long time ago, to listen to what the doctors say, but then do your own research and form your own opinion. Some doctors can be very narrow minded.

 

[Patricia56]

Hi Momoftwinboys.

Badger (my Cder) is the boy part of a set of boy/girl twins so I have some idea of what your life is like right now.

As I always tell people, I am not a doctor and you should always check anything I say or suggest out with a doc.

The first thing about growth in kids with CD is that if there is growth delay or failure things are not going to get substantially better until their CD is in remission.

The second thing is that if they are on any kind of steroid (prednisone or entocort) they are probably not going to grow at anything approaching a normal rate. Remission based on steroid treatment is NOT remission. It's a big bandage covering a wound so the patient doesn't bleed out. The bandage is good but healing the wound is much better.

According to the chief researcher (Gupta) in the growth study that Badger was in for a couple years, bone age xrays are a very rough measure of bone age when you are only looking at one point in time. The best way to use bone age xrays is to look at two or more taken a year apart, preferably taken at the same facility and read by the same radiologist. She felt they were most useful as measures of growth over time not of the actual "bone age" at a given point in time.

Tenancity 's info about growth plates is essentially correct. Unfortunately, unless there is a documented growth hormone deficiency growth hormone treatment is unlikely to make a difference and I can guarantee that your insurance company is going to fight tooth and nail to keep you from trying it. Big $$$$

A couple trials with children with growth delay did not find any benefit from growth hormones. As I understand it, the biggest thing you can do to get your kid back on the growth track is to get them into solid remission, make sure they are not deficient in anything, and if they also have low weight, supplement their diet to increase their weight and overall well being.

Measuring growth is tricky. Measurements must be done very precisely and regularly. Determining velocity generally requires measurements over at least 6 months and preferably over two years. Measurements should be done using a calibrated measurement scale preferably the same one each time, and height should be measured using the same technique three times to ensure that the height measurement is correct.

Kids (as a group) grow in seasonal spurts. They grow in the spring and summer and not in the fall and winter. So lack of growth over a six month period is not significant in most kids. A year is better but looking at height velocity over 18 months to two years is most likely to give you an accurate assessment.

Most people use mid-parental height as a guide for expected height. What you may not know about mid-parental height is that it has a range of +/- 2 inches. So if you have a mid-parental height of 5'9" the expected height should fall somewhere between 5'7" and 5'11".

If parents are unusually tall or short, then regression to the mean becomes an issue in predicting mid-parental height. If you are unusually short then your children are more likely to be taller than predicted and shorter if you are unusually tall.

When looked at as a group, children with growth delay often catch up to within the normal range of the mid-parental height. Provided they are in remission and not on steroids.

Children with growth failure (less than 5%) are less likely to catch up to the normal range of mid-parental height once they are in remission. But they will grow once they are in good remission and have a solid nutritional base to support growth.

All children with CD should have DXA scans done on a regular basis. If your child has been on prednisone or entocort then DXA scans are really not optional. Full blown osteoporosis can happen pretty fast and lead to spinal fractures and broken bones.

OK, that's the basic information I know that my brain is producing right now.

If you have questions, ask away.

Patricia

 

[momoftwinboys]

My son was on prednisone for appx 6 weeks when dx in the fall (30 and tapered off). Looked like small flare started in April and treated it with pred short burst (20 for seven days). They also tested azathioprine levels at the same time and he was not at therapeutic levels and increased his dose. His crp levels have looked good except at dx and in April. Sed has got down as low as 17.
Is he in remission? I don't know. He is living a full life, activities and sports. His stools are mostly 4's and 5's. He does not have pain that I know of. Occasional cramps.
He has grown since dx.... Just not caught up with brother.
Do u suggest any specific nutritional testing? We have tested for d and zinc, both low and supplements added. Also was told he is no longer anemic. We have had some scares but ended up being ok. Was seen by rhuemi for pain in lower back...turned out to be muscular and was resolved with stretching exercises. Twin brother complained of stomach pain this winter and was also seen in gi clinic. Given miralax for constpation. Pain and constipation gone and no longer takes it. Will still keep a close eye given his increased odds.
Any suggestions on boosting calorie/nutritional input?

We are grateful he has done as well as he has. Too many of these kids are enduring more than any kid should.

 

[Patricia56]

I'm not sure what you mean when you say his stools are "mostly 4's and 5's" but if he is doing that well he is probably in at least partial remission.

Evaluating lab values (ESR 17) is tricky because different labs have different "normal" ranges for the same tests. At the lab we use an ESR of 17 would be high but at our old lab it would be in normal range.

ESR is only somewhat helpful in evaluating inflammation. It measures systemic inflammation and go up because of a cold, bruising from a fall, over-exertion, you name it. And it can stay high for weeks after the cause is completely gone.

Most GI's prefer to use CrP because it is a measure of inflammation within the past 24 hours.

Now my son has rarely had an elevated CrP even when flaring so that's not too helpful to us.

for unknown reasons, boys are more often affected by growth delays and failure than girls. So he may not catch up to his twin. If his growth is NOT following a normal growth curve (since his doctor decided he was in clinical remission) then that s probably a sign that he is not actually in good remission. In taht case I would bring it to the doctor's attention.

Diet supplementation depends on his overall health. A lot of people supplement with Ensure or Boost- type products. I suggest you ask his doctor about his or, if the clinic has a nutritionist available, ask for a consult.

 

[momoftwinboys]

Sorry, we use the Bristol Stool Chart at our house. Tried to set up something in the beginning that will not embarrass him as much when he is a teenager and mom wants to know about his poops. Simple answers required. 4=formed and smooth 5=blobs If I was Dusty or someone better with technology I would post the picture here as I have seen done...instead I can offer you the link.
http://en.wikipedia.org/wiki/Bristol_stool_scale
We get him to do boost sometimes. He does not like pediasure. Got Resource Breeze delivered today and he was okay with it. Seen it mentioned here and at the ccfa nutrition seminar I went to. Nestle also sent Benecalorie with the package, so we may try that out. http://www.nestlenutritionstore.com/departments/supplemental-nutrition/calories/benecalorie Does anyone know anything about this? I asked a nurse about it today who actually used it for her son who does not have much of an appetite. It was recommended to her by a nutritionist in her hospital.
We have also added Carnation instant breakfast 3-4 times a week a couple of months ago. He eats a pretty good balanced diet. Loves fruit and seems to do okay with it. He just does not eat alot when he eats, but he does eat.
The clinic told us 13 and below was considered normal as far as ESR. His CRP has been less than.5 several times and it does seem to go up when he has symptoms.
We like his doctor, but do not hold the nutritionist in the same light. Have met with her twice and she is all happy with what he is eating...but does not give us much info/help.
Interesting side note, today while the boys were at tae kwon do, their grandmaster mentioned that he was noticing a big difference in the size of the boys that he did not notice earlier. He gave me a card for a pediatric acupuncturist that he said had some positive results with growth in kids. Willing to at least look into it. Told the Master that my son is not a needles fan...he said the guy was very good getting kids comfortable with the fear. Quite coincidental, that he mentioned it today and Nestle sent a case of the Benecalorie in the package I opened today. Their friends mom, who invited them swimming today, the nurse above gives her son Benecalorie Hmmmm.

 

[lad473]

My son is a newbie to this Crohn's situation. He is a bit of an oddity: he is huge and always has been. The dr. suspects that is why we didn't notice that he hasn't grown in a year. He was diagnosed in June of this year and started Remicade immediately-- his case is pretty extensive, with ulcers from esophagus on down. He is still one of the biggest in class, but not growing more than a 1/4 when you are a 10 year old boy isn't a normal thing. I don't have aspirations of creating the next NBA star, but I would like for him to be what he is supposed to be-- we are a tall family (I'm 5'9", dad is 6'4"). Little sister is rapidly approaching him.

 

[DustyKat]

Bristol Stool Chart...

Dusty. :biggrin:

 

[kiny]

I have asked about this since I got crohn as a kid. I grew up just fine even though I ate very little. Growth retardation is just that, it postpones the growth, it's not the same as growth stunting. Growth retardation fixes itself by delaying the growth process and the growth plates will stay open longer to make up for this. Growth stunting, which is permanent, is extremely rare in the West and is something that is more commonly seen in people who are starving, and even then, most of those people still reach their growth potential for some reason. Just putting into perspective that growth stunting is extremely extremely rare in the West. Somehow I got the idea that growth stunting can happen from undereating, no it happens when someone is basically starving and gets so few nutrients that it goes beyond growth retardation into actual stunting of growth. This is how it was explained to me.

 

[momoftwinboys]

Thx Kiny. I am optimistic he will catch up eventually. I am very grateful that he is growing.
Before the issues started, the boys were tracking 50 percentile height and 75 weight. Not heavy but as dr said when 3 or 4 they were very muscular for their age. H, cd twin is now tracking 25 ht 50 weight. Again growing but following a different track. The bummer of this is they are young for their grade, so they have often been among the smaller kids. Heading into middle school this fall and boy some of those middle schoolers look like giants in comparison.
May I ask how old you were when you were dx? How did you growth progress?
BTW, appreciate all the info you post in the books research section.

 

[kiny]

My crohn is a long story, being underweight was a small part of it. I got crohn at around 16 (I was diagnosed a long time after), I weighed 36kg (79 pounds) at the time, after I was put on EN and got some medication, I gained some weight back, but I started to blame pretty much everything on my disease, I got angry that everything came crashing down. My school that failed, my relationship failed, my dad who had crohn died a year after my diagnose (he died of heart failure, but him having crohn made it worse for me), my mom had not enough money to take care of me, and I got the notion that I was not good enough, including my height, (which was 5'10), so I wanted to find out if my growth plates were closed, so they took a CT scan and they said they were closing, it took me years to accept that my height was actually normal, that I was normal, I failed school because of the disease, and that I wasn't a complete failure, my life pretty much was an emotional hell at the time. The anger resulted in a lot of people thinking I wasn't sane, and I spent a few months in a clinic where people thought I wasn't sane, I was perfectly sane, I just couldn't deal with my life anymore at the time, and I took it out in violence, people thinking I wasn't sane made me so much angrier, resulting in even more people saying I wasn't sane, until one doc who I'm stil grateful for, realised that I was normal. Took me a long time to be where I'm at now.

That's way more than I wanted to say, but just having crohn as a kid, you start to question everything, including your height, even if it's completely normal.

 

[momoftwinboys]

Kiny this disease just plain sux and you had more than your fair share to deal with at a young age. I think anger is not unusual given the situation. Glad you have gotten into a good place. Thx for sharing. Something to watch as he grows into a teenager.
Also thanks for the encouraging words re delay vs failure.

 

[Jenn]

Momoftwinboys - I SO relate! It's heartbreaking as a mom. I wish there was a growth fairy dust we could give them to catch up. Alex got a hand xray last year and was also 2 years delayed. As said above, his endocrinologist said that growth hormones are not used generally, you don't want to age them faster and cause stunting, but he'll likely grow long past everyone else stops. Essentially, we should chart his growth on his bone age, not his actual age. It's some consolation, but still so frustrating to see him so tiny among his friends. The key really is treating the cause as best you can - stupid small bowel inflammation! - nutrition and exercise and time. <hug>

 

[Patricia56]

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