Delayed puberty

[upsetmom]

As some of yous know my daughters is 15.5 and is showing very little signs of puberty.
I've spoken with my GP and he told me i should contact her IBD team and see what they say.

Today i spoke to the nurse and asked if there was some blood test we can do to check her hormone levels. I was told we'll talk about this next week at our appointment.

When i told her my daughter was very delayed she turned around and said OH!! in a way that's a good thing because she'll catch up anyway...:ymad:...it's hard enough being a teenager but when you don't look like any of your friends i don't see how that's a good thing.

She did say they see this often in kids with IBD.

I hope we get down to the bottom of this problem...

 

[CarolinAlaska]

As some of yous know my daughters is 15.5 and is showing very little signs of puberty.
I've spoken with my GP and he told me i should contact her IBD team and see what they say.

Today i spoke to the nurse and asked if there was some blood test we can do to check her hormone levels. I was told we'll talk about this next week at our appointment.

When i told her my daughter was very delayed she turned around and said OH!! in a way that's a good thing because she'll catch up anyway...:ymad:...it's hard enough being a teenager but when you don't look like any of your friends i don't see how that's a good thing.

She did say they see this often in kids with IBD.

I hope we get down to the bottom of this problem...

Delayed onset puberty is what got the ball rolling for us on our way to our Crohn's diagnosis. I found out that some puberty symptoms start from the kidneys and are started by testosterone. These may include body hair. Once the ovaries start kicking in to produce the estrogen, the breasts will start to develop - breast buds, tenderness, etc. From the beginning of breast bud formation it will be 2-2.5 years before the first period will come.

Has your dear daughter developed breast buds? If no, I agree that testing is indicated, if yes, then has it been 2 - 2.5 years since they started developing?

Anyway, I'm not looking for those answers, just thought I'd pass on the info I've learned. Added nutrition has helped Jae move along to point of developing breast buds. She had a big endocrine blood workup last April
and there was no reason for the delay, but of course since December/January we've known Crohn's was the reason.

 

[upsetmom]

Has your dear daughter developed breast buds?

Not at all ...I don't understand how this is supposed to be a good thing according to the nurse. I hope they don't try and tell me this at our meeting next week.

 

[Catherine]

If you don't have paed to look at the development issue you need to move quickly, if NSW is the same as Victoria. Once she is 16, you move to adult specialist if not already seeing a children specialist.

This why Sarah see a adult GI, as we got our referral when she was 16 years and 3 months.

 

[upsetmom]

Catherine
Its the same here in NSW .

We had a lot of trouble when she was first diagnosed no DR would see her because she wasn't 16....... at the childrens hospital she can stay there till she's 18.

 

[Catherine]

We had trouble getting a MRI because GI practice normal uses the childrens when they have patients as young Sarah.

Get this the local hospital won't do iron influsion in under 18 years, so too old for the children but too young for other hospital.

 

[Tink572]

Is an endocrinologist an option? I took my son to one to be checked for his lack of growth. He did bone age x-ray, full body bone scan, and growth hormone tests. He was the one who suggested we needed better control of his Crohn's (son really wasn't having pain from Crohn's, just had lack of growth, labs indicated high SED rate at the time too) so we changed doctors and discovered how bad his terminal ileum was.

Ultimately, growth and puberty didn't begin until we had his Crohn's under control, which took surgery for my son due to a stricture.

 

[afidz]

Not sure if this helps, but my Dad was diagnosed when he was 11, and was very sick for a few years after. his puberty was very delayed, but my grandma said that one summer is body decided to catch up and he grew 6 inches and started getting all of the "manly" features over night. I guess the point is is that it will happen, its just going to take a little longer. I hope her team of doctors can figure out something for her

 

[xmdmom]

Delayed puberty is common in teens with Crohn's especially if they have low BMI and are not in remission. In general, treating Crohn's and decreasing inflammation, and getting weight up, lead to pubertal progresson and statural grrowth.

CarolinAlaska is correct that there are two parts of puberty: gonadarche (ovary or testicle) and adrenarche (adrenal). Adrenarche causes underarm odor, acne, and pubic hair. Gonadarche in girls causes breast development, and later periods. The kidneys do not play a role. No breast buds at age 13 or periods by 16 are considered delayed. Delayed puberty also causes a fall off in growth and delayed bone maturation seen on hand xray. Many people have delayed puberty that is familial.

Upsetmom, is your daughter quite skinny? how tall is your daughter? Endocrinologists can treat delayed puberty with low dose estrogen.

http://www.nature.com/pr/journal/v53/n2/abs/pr2003210a.html

Delayed puberty frequently complicates the clinical course of young patients with inflammatory bowel disease, more often in Crohn's disease than ulcerative colitis. Undernutrition has been thought to be the main reason for delayed puberty in these patients. However, puberty may be delayed despite a normal nutritional status. Observations in patients with inflammatory bowel disease and in rats with experimental colitis suggest that inflammatory mediators may have a direct adverse influence, independent of undernutrition, on the onset and progression of puberty. Serum androgens are consistently reported to be reduced in patients with delayed puberty and inflammatory bowel disease. This reduction is not necessarily secondary to a reduction in gonadotrophins as serum concentrations of gonadotrophins have been reported to be normal or even increased in some studies. Management of delayed puberty involves calorie supplements to correct undernutrition and treatment of inflammation. Observations in boys with delayed puberty and controlled studies in experimental models of intestinal inflammation suggest that testosterone therapy can accelerate puberty.

 

[upsetmom]

Upsetmom, is your daughter quite skinny? how tall is your daughter?

Her BMI is 18.1 shes underweight ...up until recently she was in the normal range but its gone down due to increased height and no weight gain.

Thanks everyone i'll let yous know what happens next week.

 

[Johnnysmom]

When Johnny was first sick our Pediatrician sent us to and Endocrinologist. We were eventually sent to a GI. Our GI was clear with us that they felt no need to refer to a Endo because they felt if the crohn's was treated then the growth or delay wouldn't be an issue. We were lucky because we had already been referred. Our Endocrinologist kept us on even after the crohn's diagnosis and his help was invaluable. I would recommend seeing one and soon, given your daughters age. Our endo said growth stops when the BMI gets too low. My son's BMI was 15.6 when he was diagnosed and he had stopped growing completely.

 

[Jennifer]

Dunno if it helps but I was diagnosed when I was 9 and was always underweight then and through my teens. My period started around a normal age (I think I was 12 but at most 13) yet my breasts continued to develop past the age of 18 (I was an A-small B when I was 16 and became a C in my early 20's). Also I was flaring up until I was 17 when I finally had my resection.

 

[xmdmom]

Johnny's Mom,
What kind of help did your child's endocrinologist give?

The recommended treatment for growth failure due to Crohn's is treatment of Crohn's and increasing calories and weight. GH is actually high in children who are malnourished; the problem is that the body doesn't respond to GH when there is malnutrition. The body tries to conserve energy when it is malnourished using mechanisms that inhibit growth and menstrual cycles/ovulation.

Upset mom-- missed exactly how old your daughter is and her height.

 

[Johnnysmom]

He did an xray of his hand and arm and determined his bone age and predicted his adult height. They also determined his Tanner stage of development and let us know when he would start puberty. They tested his insulin-like growth factor-I (IGI-I) and his thyroid function to make sure his body was producing normal levels.

We would go back every three months and they would check his tanner stage, weight and height. There are certain meds they can give you (I only know what they do for boys not for girls) to kick start puberty if you are having delays. For boys they give growth hormone injections. I don't know what the equivalent for girls would be. My friend who's son has crohn's and is delayed and at age 16 needed the injections, Johnny has not thus far. But it was so much valuable information, it made us both feel better once we knew what to expect and there are things they can do as long as they do it before the growth plates close. Johnny's bone age at 11 years 7 months was that of a 12 year old but my friend who's son had severe crohn's her son at age 15 years 5 months had an eleven year old bone age. So they know his growth was extremely delayed and the injections helped him start puberty.

Our endocrinologist always took our concerns about Johnny's height and weight much more seriously than our GI ever did. For us, it was part of the process in learning about his disease and how it effects him. We were glad we went.

 

[Catherine]

I have had one child have tested for failure to grow. All testing was done by a Pediatrician this include wrist xray.

This child is by middle daughter and she doesnot have crohn's.

Our pediatrician said that when a girl of 14 years and 9 months as Rachel was when the testing was done is more than 10 cm shorter than the expected height using parents heights testing should be done to ruleout underlaying problem.

I will look for my copy of her blood tests.

From our experience I believe this testing is done by a pediatrician in Australia.

 

[upsetmom]

Upset mom-- missed exactly how old your daughter is and her height.

Shes 15.5 ...her height is 166cm so obviously that isn't as issue.

 

[CarolinAlaska]

One thing I found is that our local radiologist read my daughter's hand x-ray for bone growth as normal when she was 13, but the pediatric endocrinologist to a closer look and found her to be about 10-1/2 years on her x-ray. I don't know how experienced your radiologist is that reading these x-rays, but it seems that must be taken into consideration when a regular pediatrician is doing the workup.

 

[Johnnysmom]

I know that our endocrinologist was far more knowledgeable about interpreting results and reading films than our pediatrician could have been.

 

[Jmrogers4]

Thank you all. Reading this thread has certainly brought up some questions for us, hoping the extra nutrition from the supplemental EN will jump start things, but I will be asking about all these "next" steps at Jack's appt. We have never seen an endocrinologist nor has he ever had his bone age determined. Although at 15.1 BMI I'm hoping that is what is causing the delay and when we get it up we'll see a difference.

 

[Crohn's Mom]

I agree JMrogers that the extra nutrition is key with the growth. JJ has been drinking just one Boost a day for a month now and he has grown another inch. He's a whopping 5ft 2 now but that's exciting for him LOL.
We've definitely seen the most benefit with the HGH injections since he has started drinking them tho.

 

[CarolinAlaska]

Jacqui, you're right. I think nutrition is the key. At least that is what I'm counting on...

 

[Jenn]

late to the party, but wanted to add to ask for a hand bone age xray. Your pediatrician can put in the order, then follow up with an endocrinologist to discuss it. It's key to intervene before the growth plates close. Have the endocrinologist check the blood levels of growth hormones and discuss that too.

Delayed is actually good, they'll keep growing long after everyone else stops, but I know that doesn't help for now. Alex's bone-age is 2 years behind his chronological age, so I'd expect him to start puberty roughly 2 years later than I did and my non-IBD son did, so really not til he's 16. And he's tiny, but all we can do for now is keep his IBD under control to promote growth (he stopped while undiagnosed) and be patient.

 

[xmdmom]

Would not get GH levels*. There is no reason to suspect that GH is off in your daughter's case and as I mentioned GH is not the issue in Crohn's growth failure, malnutrition and inflammation are. Caloric supplements (eg boost, petamen....) can definitely help growth.

Jenn- curious, is periactin is helping?


*In any case, GH can not be checked in a single test. It is released at night and in response to exercise. When GH deficiency is suspected, provocative tests are done and multiple samples taken. IGF-1 can be looked at with a single blood test but is low in both children with low BMI and in children with GH def. But delayed puberty is no reason to suspect GH def.

 

[kimmidwife]

This is a very interesting thread. In a way upsetmom as someone else said the delayed puberty may be a good thing as it gives her a chance to catch up. Caitlyn lost about three inches per her doctor as she was diagnosed with crohns in the middle of puberty and never gained back those inches because she got her period and stopped growing right in the midst of being so sick. But I also agree that it is important for it to be evaluated by either a gynecologist or endocrinologist just to make sure there is nothing else going on.

 

[crohnsinct]

Coming from left field here but a growth in height with no corresponding increase in weight would signal an issue for our doc. According to him a gain in height is good as far as inflammation goes but all that body has to weigh something and he would be questioning (not panicking) about no weight gain.

FWIW -- My daughter was severely malnourished at dx 12 1/2 and looked like an 8 year old. Once we got her CD under control and she did a course of EEN she grew 4 inches, gained about 20 pounds and is solidly showing signed of puberty (breast development, hair) all while still at a BMI of 15. We are still waiting for her period but suspect more weight gain will help with that but her sports actually hurt her here.

Anyway, all this to say, I definitely agree the delay is an issue and should be addressed with the GI. Especially because it could potentially signal the CD isn't as controlled as everyone may think.

Good luck!

 

[jmckinley]

Nutrition definitely a factor! Since we have gotten Ryan's Crohn's "mostly" under control, he has grown 5 inches in height and has facial hair. It may not be a big deal as far as life threatening, but emotionally to a teen, it's a big deal and sometimes they don't regain the inches they lost!

 

[Jenn]

Yes, the periactin helped Alex's appetite a lot, xmdmom . He had zero appetite while the disease was unchecked. Though we do have to cycle 6 weeks on, 2 off, for best effect. Now, it's snowballing, his labs are good, his appetite is good, his weight gain is good. He's growing again too, just not catching up and probably won't completely catch up for a couple years past everyone else stopping. Bonus though, the periactin also helps his nasal allergies.