Bone age paper

[my little penguin]

http://www.ucsf.edu/news/2012/05/12...-children-should-include-measurement-bone-age



Something to look into.
I know DS had one done but I don't now what his results were.???

 

[DustyKat]

Thanks for posting mlp!

Dusty.

 

[Jenn]

Alex had one done and was 2 years delayed. Growth failure from malabsorption is his biggest problem. I wonder how often the xray should be repeated?

 

[my little penguin]

Jennifer -has he tried an ng tube with an elemental formula to see if that helps?
I know with DS even on remicade if we were to go without peptamen jr he would be I'm trouble weight wise since they need more easy calories ( ie broken down).
If DS couldn't drink it orally he would be on a nightly ng tube.
Hugs

 

[Crohn's Mom]

Thanks MLP !

Poor growth may be the only presenting sign of Crohn’s disease in children and adolescents.

That particular line makes me want to run to our Pediatric GI and shove this paper in her face ! We already know my youngest isnt growing or producing growth hormone (he is on 2.6 mg of HgH a day!) ~ however, no one can seem to give us an answer as to "why" he's not. They want to over look his constant heartburn, abdominal pain, skin issues, and diarrhea ~ doesn't make any sense to me :ywow:

Thanks again for posting ~ that article will help me not to give up! :thumright:

 

[Johnnysmom]

We just saw a new Endocrinologist at Cincinnati Children's last week and she was wonderful. She said that growth stops or slows for 3 main reasons with Crohn's. One is that the inflammation cause low growth hormone to be produced. Two is that the level of growth hormone is adequate but the inflammatory process causes the body to be unable to be receptive to the growth hormone. (This has something to do with Cytokines and is not fully understood). The third is from Malnutrition either because the child is not eating or not absorbing or both. She said she sees this very clearly in her ADHD patients who are taking Ritalin. They lose weight because the drug is an appetite suppressant and their growth curve completely stops or dramatically declines. She said this would be the number one factor in my son's growth. She said mild to moderate crohn's disease should not effect his growth only long term prednisone, malnutrition or severe uncontrolled crohn's would. She said the biggest effects are seen once a child gets below the 20 percentile for BMI (body mass index). The only thing she could help us with was if the level of growth hormone is low. There are studies where growth hormone is used as a treatment to crohn's.

Low growth hormone is treatable. Did you have the levels tested with an endocrinologist? Did they offer any treatment? If you haven't seen an Endo I would ask for a referral. I would also ask the Ped G.I. for a fecal cal test too. We started at the endocrinologist because weight loss and lack of growth were my son's only symptoms.

Keep pushing. For 2 years they told me my son was just skinny as he was losing weight. Good luck!

 

[Jenn]

Alex's biggest delay was as he went undiagnosed and was untreated. Now that he's on meds, his weight has been stable and increasing and he's gained a couple inches height. But he hasn't caught back up to where he should be. After yesterday's visit, we are now following up with the endocrinologist next month and repeating the hand xray, just to monitor. No, we've never done EN or anything besides supplementing with shakes, mainly because of non-compliance. It might be worth trying anyway, at least before trying surgery. He's absorbing well at the moment, but still losing protein.

 

[Crohn's Mom]

Thanks Johnnysmom
Yes, he is seeing an Endo specialist. He is the one prescribing JJ the Hgh. He has been wonderful and even tho JJ's initial blood tests didn't show much, I insisted that we do the 4 hour test as well. Turns out I was right, and they found that JJ is basically producing NO growth hormone. His dose of Hgh is rather high, and we had to get special permission from our insurance company and prove to them before they would approve it. I guess I should have been a bit more clear, I meant that although I know he's not producing growth hormones, I want to know WHY he's not? Does that make sense ?
Although, I don't want another child of mine to have a Crohn's diagnosis, I know what NOT having a diagnosis while the disease sits silently growing can do to them...:/

 

[xmdmom]

I was reading the thread and couldn't pass up chiming in as my background is in pediatric endocrinology.

GH deficiency can occur as an isolated abnormality or due to a pituitary or hypothalamic abnormality. Most often its idiopathic- meaning doctors don't know why. Provocative tests (the 4 hour test) aren't perfect and some children may "fail" these tests* and look gh deficient when they are not, leading to treatment of children who make growth hormone normally. Using a higher dose of GH than normal raises a red flag (to me) that a child may not really be gh deficient. Crohn's mom, did the doctor say why your child needs a high dose?

Children with GH deficiency typically are pudgy, but not always, while children with growth failure due to crohn's are usually thin. The first symptom of Crohn's can be growth problems. A growth chart helps identify different patterns of growth. A child with crohn's often grows normally and then begins to slow down in statural growth, diverging from his or her growth curve. Crohn's mom, did your child have other screening blood work (CBC, esr, crp, chem profile, thyroid function, IGF-1)? Were these all normal?

Feel free to pm me if I can be of any help.

 

[Crohn's Mom]

Using a higher dose of GH than normal raises a red flag (to me) that a child may not really be gh deficient. Crohn's mom, did the doctor say why your child needs a high dose?

He said it's because on the 4 hour test, it showed that he was producing less than 1 of GH (his words were "you're basically not producing ANY GH")

Children with GH deficiency typically are pudgy, but not always, while children with growth failure due to crohn's are usually thin.

JJ would be considered "pudgy". Always found it odd, because he doesn't eat much at all. However, his sister was/is never "underweight" or had any weight issues and she definitely has CD. (since 9 yrs.)

The first symptom of Crohn's can be growth problems. A growth chart helps identify different patterns of growth. A child with crohn's often grows normally and then begins to slow down in statural growth, diverging from his or her growth curve.

JJ had always followed his curve on the growth chart, up until about 2 years ago. He was never "tall" for his age, but stayed on his curve. He has gone from being in the 50% to now the 3rd % for his age. His "curve" has taken a drastic nose dive.

Crohn's mom, did your child have other screening blood work (CBC, esr, crp, chem profile, thyroid function, IGF-1)? Were these all normal?

Yes he has.
thyroid was normal
esr/crp barely above normal
Igf-1 (if this is the one I am thinking of ? its been a while) grossly abnormal
chem profile ? I'm not sure if hes had this
CBC is usually "normal"

thanks so much for your input xmdmom ! I really appreciate it
The whole reason we ended up at the Endo specialist was because I felt that between his pediatrician and pediatric GI that neither were paying enough attention to his symptoms ~ and both seemed to think that his lack of growth was "normal" and no big deal. I took it upon myself, against their opinions, to take him to the Endo specialist.
It does concern me that JJ is on such a high dose with no one taking into consideration his sisters severe disease, and that yes, JJ could very well have CD too, but I figure the least we can do is try and get his growth/puberty going so he doesn't (hopefully) end up "stunted". He is just 4 months away from his 15th birthday and hasn't even begun puberty :eek2: His bone age scan was a little over 2 years behind.

edit:
found his results :
IGF-1 110 (normal range 152-540)
CBC normal except for MCH was low and Monocytes High
Chem profile normal

 

[xmdmom]

more thoughts... and lots of questions..

IGF-1 is low but not so low that it cries out GH deficiency. IGF-1 is low in normal teens with delayed puberty and both GH secretion on testing and endogenous GH secretion is low in teens with delayed puberty. Some doctors give testosterone before the gh testing in boys with delayed puberty http://www.degruyter.com/view/j/jpem.2004.17.1/jpem.2004.17.1.77/jpem.2004.17.1.77.xml to differentiate between GH def and delayed puberty.
So I still wonder about the GH def diagnosis.

Delayed puberty (for any reason) causes a fall off in growth compared to peers with normally timed puberty. Do you or his father have a history of late puberty? (Crohn's could also cause a delay but would likely be with a low BMI, though not always...)

Bone age would be delayed in any case of delayed puberty.

Did the doctor do a CRP? a MRI of the head? (MRI used to be routine if GH def was diagnosed when I was practicing.)

Did the doctor try a normal dose of GH and have no response, and then move to a higher dose? THis would go against classical GH def.

A fall off in growth at 12 or 13 sounds like constitutional delay of puberty or new onset something. If the doctor is calling it GH def, what did the doctor say was the cause of new-onset GH def?

GH is overdiagnosed. The diagnosis and treatment criteria remain unclear and controversial and drug companies really push the drug. Below on the utility or lack of utility of test results.

Current Opinion in Endocrinology, Diabetes & Obesity:
February 2012 - Volume 19 - Issue 1 - p 47–52
doi: 10.1097/MED.0b013e32834ec952
GROWTH AND DEVELOPMENT: Edited by Lynne L Levitsky
Diagnosis of growth hormone deficiency in childhood
Stanley, Takara

Abstract
Purpose of review: The diagnosis of growth hormone deficiency (GHD) in childhood is challenging, in large part because of the lack of a true gold standard and the relatively poor performance of available diagnostic testing. This review discusses the recent literature on this topic.

Recent findings: Auxology and clinical judgment remain the foundation for the diagnosis of GHD. Provocative growth hormone testing is poorly reproducible, dependent on factors such as body composition and pubertal status, and further limited by significant variability among commercially available growth hormone assays. Measurement of insulin-like growth factor I and insulin-like growth factor-binding protein 3 is not diagnostically useful in isolation but is helpful in combination with other diagnostic measures. Neuroimaging is also useful to inform diagnosis, as pituitary abnormalities suggest a higher likelihood of GHD persisting into adulthood. Although genetic testing is not routinely performed in the diagnosis of GHD at the present time, multiple recent reports raise the possibility that it may play a more important role in diagnosing GHD in the future.

Summary: Beyond physicians’ integrated assessment of auxology, clinical presentation, and bone age, current tools to diagnose GHD are suboptimal. Recent literature emphasizes the need to reappraise our current practice and to consider new tools for diagnosis.

 

[xmdmom]

I found this interesting-->Growth failure is common in Crohn's even prior to GI symptoms.

“Growth failure frequently complicates the clinical course of children with IBD, more often in Crohn's disease than in UC.2,,3 Its reported frequency depends to some extent on its definition; a reduction in height velocity is the most accurate measurement of growth. A decrease in height velocity below the third centile has been reported in as many as 88% of patients before the diagnosis of Crohn's disease; in just over half of this group, growth failure was documented before the onset of symptoms attributable to Crohn's” disease.(4)” http://qjmed.oxfordjournals.org/content/94/3/121.full

This is the article (4) that was sited:

Gastroenterology. 1988 Dec;95(6):1523-7. Decreased height velocity in children and adolescents before the diagnosis of Crohn's disease. Kanof ME, Lake AM, Bayless TM. Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland.

Abstract: Severe linear growth retardation occurs in 20%-30% of children with Crohn's disease, yet, it is unknown how often decreased height velocity precedes the diagnosis. The height velocities of 50 children and prepubescent adolescents with Crohn's disease were reviewed. Decreased height velocity antedated the diagnosis in 44 patients. Twenty-one patients had a reduction in height velocity before intestinal symptoms were noted. Additionally, 17 of 32 patients with attenuated linear growth had a reduction in height velocity before any weight loss. Linear growth impairment in Crohn's disease, more common than previously recognized, may precede weight loss and can be the earliest indicator of disease.

 

[DustyKat]

Thank you for your insight and information xmdmom.

 

[xmdmom]

Dustykat,
You're welcome! I'm glad to share info.
I am very thankful for all the useful info I've learned on this forum.

 

[Crohn's Mom]

So I still wonder about the GH def diagnosis.

Me too.
I also wonder, will the HGH work if he doesn't have a true GH deficiency? If he's just "delayed" ? Will it "hurt" anything ?
To answer another question, yes, I was very delayed myself. I didn't start menstruating until I was nearly 16 years old. I was only 5'4 when I graduated high school but I am now 5'6.
I have always had that in the front of my mind when it comes to JJ as well. I just don't want him to be "stunted" if we can avoid it. I know is bone age is 2+ years behind, so that gives him more time than other boys to continue growing past the age of 17, when most boys stop.

Yes, the doctor did do and MRI of the brain to check for pituitary abnormalities and all was normal they said.

A fall off in growth at 12 or 13 sounds like constitutional delay of puberty or new onset something. If the doctor is calling it GH def, what did the doctor say was the cause of new-onset GH def?

Yes he is calling it a GH def, but he has not speculated as to "why". I did of course mention JJ's sister and having severe Crohn's and going undiagnosed for 7 years. He didn't have a response to this that I can remember.
The Endo's office is part of Arnold Palmers childrens hospital, so I am considering asking the Endo doc for a referral to a Ped GI there when we go for the follow up appointment in December.

Thank you again for all of your input! Sorry I have been so slow to respond, my daughter is sick again, and I've been very busy

 

[xmdmom]

Your delayed menarche supports a diagnosis of constitutional delayed puberty- NOTE: I'm not making the diagnosis! A growth chart, physical exam and history should allow a good doctor to determine if this diagnosis is correct. Final height is not stunted in delayed puberty.

Incidentally, my kids and I all were late bloomers. My son has Crohn's diagnosed just before he turned 19 (mild symptoms perhaps for years) but I don't think it impacted his growth. He is still growing and is about 6 feet (130lb with clothes). You wrote “was only 5'4 when I graduated high school but I am now 5'6.” Me too!

The long-term effects of treating non-GH def children with GH are not known and it is certainly not the therapy of choice for delayed puberty. Delayed puberty can be treated (if a teen has psychosocial distress) with small doses of testosterone or an oral sex steroid.

GH therapy has some risks. It's known to cause insulin resistance during treatment and may precipitate glucose intolerance or diabetes during treatment in a few. Excess GH (acromegaly) causes cardiovascular dysfunction and some have recommended monitoring heart size in non-Gh def people receiving high dose therapy, though I saw a small ped study that found no cardiac abnormalities during therapy. GH increases IGF-1 and there is a theoretical risk of increased cancer, though this hasn’t been observed. (See abstract below re GH tx in non-gh children.)

Crohn's Mom, I will try to send you an article that has a growth curve and good discussion about constitutional delay of growth and puberty.

Bottom line: I would not want to treat my child with high dose GH if he had delayed puberty rather than GH deficiency. I’d ask the pedi endo: Could this be delayed puberty causing a decreased GH secretion? Why does he need high doses of GH? Why is the GH deficiency presenting now ? Screening for Crohn’s sounds reasonable.

I'm sorry to hear that your daughter is sick again and hope she is feeling better soon!


****

Safety of Growth Hormone Treatment of Children with Idiopathic Short Stature: The US Experience

David B. Allen; University of Wisconsin School of Medicine and Public Health and UW American Family Children’s Hospital, Madison, Wisc., USA
Horm Res Paediatr 2011;76 (Suppl. 3):45-47 (DOI: 10.1159/000330159)

Recombinant human growth hormone (rhGH) is approved in the United States for treatment of idiopathic short stature (ISS). The occurrence of adverse events (AEs) and the long-term safety of rhGH treatment in this patient population are reviewed. Data were analyzed from postmarketing surveillance studies that included ISS patients, prospective ISS treatment trials and studies of specific AEs in smaller groups of rhGH-treated children. Frequency rates of targeted AEs (i.e., scoliosis, slipped capital femoral epiphysis, intracranial hypertension, pancreatitis) in patients with ISS are similar to or lower than the rates observed in other rhGH-treated conditions. At dosages of 0.24–0.37 mg/kg/week, rhGH treatment in children with ISS does not adversely affect blood glucose levels. At dosages ≧0.3 mg/kg/week, a dose-dependent increase in mean fasting and stimulated insulin levels is observed. Current evidence derived from ‘on-treatment’ surveillance studies suggests that rhGH does not increase the risk for new malignancies in children with ISS.The safety profile of rhGH at doses ≤0.37 mg/kg/week for the treatment of children with ISS is similar to or better than the profile seen in other rhGH-treated conditions and is not associated with any predictable AEs. Due to a continuing trend toward dose escalation to achieve greater height-promoting effects and the possibility of delayed post-treatment effects of hyperinsulinemia and/or heightened GH and insulin-like growth factor I exposure on cancer risk, caution and ongoing scrutiny of risks versus benefits are warranted.