Pediatric Endocrinologist - what can we expect?

[deborah_r]

Just found out my boys will both be referred to an endocrinologist. They had some labwork done and have found low levels of growth hormone. Does anyone know, is there any other way to treat low levels of growth hormone besides giving kids growth hormone? I just want to know if that is most likely going to be what we will hear.

Both of my boys are in about the 1-3rd percentile for height usually. A bone age test when DS1 was 7 revealed his bone age to be about 4 years.

I'm reading up on growth hormone treatment and am not feeling good about this. :(

[icunurse]

DD was 3rd percentile for most of her life and we were referred to a ped endocrinologist to rule out growth issues. The ped did most of the labwork and growth xray. He also said that while there are a lot of ped endo out there, there are only a few good ones. Not exactly sure what he meant by that, but I took his word for it and went to one of the doc's that he recommended (had heard of her through where I work, though she is not at our hospital anymore).

First visit was about an hour and DD was measured several different ways, weighed, growth history reviewed and charted so they could see her pattern, etc. She also had a few more labs done. The doc spoke briefly to me about growth hormone replacement and, like you, I googled and freaked. But all of her labs came back "better than good". So, we go back every 6 months for follow-up on growth. DD is currently at the 8th percentile for height and 3rd for weight now and that just might be where she hangs out.

Just try not to worry more than necessary until you see the doc and get the full picture. There are probably more labs that need to be done and why stress more before you have to? Good luck.

[deborah_r]

Thank you, icunurse, for that info. That helps a lot!

Our ped has very good credentials and we are in a large city so I have faith that she will refer us to someone good.

[KpbS]

Not sure what to expect for your first appt. but I have a friend whose DS sounds very similar to your DSs. He has had 2 rounds of growth hormone treatment and has been monitored very carefully. He has started to respond to the therapy (within the last year) and is now growing! He is 13 but not too much taller than his sister (non-bio) who is 6.

[shilo]

Just found out my boys will both be referred to an endocrinologist. They had some labwork done and have found low levels of growth hormone. Does anyone know, is there any other way to treat low levels of growth hormone besides giving kids growth hormone? I just want to know if that is most likely going to be what we will hear.

Both of my boys are in about the 1-3rd percentile for height usually. A bone age test when DS1 was 7 revealed his bone age to be about 4 years.

I'm reading up on growth hormone treatment and am not feeling good about this. :(

my DS1 was referred at about 9-10months old and has been on GH therapy since about 14months of age due to a profound GHD (growth hormone deficiency), crossing percentiles at every appointment after 6months of age until he wasn't even tracking the 1%. my DS2 has been followed by the pedi endo since a year old as well, although currently we're just monitoring as he's holding his own curve at about the 3rd%.

the first and primary thing you do want to do is keep an open mind until after you meet with the pedi-endo and pursue further testing if he/she feels it's necessary. unless your primary pedi ran IGF-1 and IGF-BP3 (insulin like growth factor 1 and IGF binding protein 3) assays (unlikely as they are specialized and expensive labs), the basic indicators of GH in routine blood work are not particularly reliable as our bodies secrete and metabolize these in fits and spurts throughout a 24hour period which is hard to capture at a single blood draw. the IGF1 and IGFBP3 are more reliable tests because they are representative of the entire cycle, rather than a single measurement in time of GH in the blood stream at that moment if that makes sense? they have taken the place of the older 24 hour serial blood draws that used to be the hallmark of testing for GHD at most of the major pediatric academic institutions.

anyway, if your kiddo is GHD (growth hormone deficient) and depending on the clinical significance (HOW GHD he is), you will want to have a lot more info to help you make the best decision for him you can. it's a fairly lengthy process to fully work up short stature - probably several visits and additional testing. keep in mind that kids who are truly GHD do not make enough on their own to not only support normal linear growth (height) but also all the OTHER things growth hormone does in our bodies to keep us healthy. important things like cell reproduction, bone density, lean body mass and strength, stamina, etc. altho we are very lucky that our son's GHD does not involve issues with any other adrenal or hormonal systems, this is not an uncommon finding during testing. kids who are GHD often have additional issues with production of key pituitary hormones (i.e. cortisol or sex-hormones), congenital conditions, etc. things you'd want to have fully assessed by the pedi-endo for sure.

i remember how scary it is to read the info on contemplating starting GHR therapy. believe me, i've lived it for almost 6 years now. but here's the thing. when you talk to the experts, read the primary studies for yourself, etc. you'll realize a few things. 1. kids who are truly have a primary GHD and do not make enough on their own require very little supplementation to grow. you throw a drop of GH at them and they grow. meaning you are often getting therapeutic results at much lower doses of therapy than they are talking about in many studies. 2. many of the 'scariest' statistics include sample populations that include kids who are either a) secondary GHD (meaning their GHD resulted from some other disease process which puts them at statistically higher risk of the complications of therapy - for example a child who had leukemia and then had radiation to treat that leukemia then has a secondary GHD and then develops lymphoma during GH therapy) or b) kids who do not have a clinically significant GH deficiency but receive GHtherapy for another reason (for example, a child with idiopathic short stature might test with normal levels of GH however, they're bone age is much older than their chronological age, so the decision is made to treat them with GH before/during puberty... but in order to see therapeutic results, they need to be on a much higher dose of GH therapy). i'm not saying there are not REAL risks to GH therapy. there are and they absolutely must be weighed. but you need all the info and testing to be able to determine the risks and benefits and needs for each child, you know? GH therapy will not make a kiddo who's genetic potential is to be a 25% individual into a 6ft tall adult. what GH therapy will do is help a kiddo who does not make enough on their own to support normal growth and cell function grow and support a return to normal cell function/reproduction. in our family, my DH and i are on the shorter side. our kids will be too and that's fine. on GH therapy our son tracks his genetic potential and maintains his expected curve at around 35%.

lastly, yes there are some new treatment regimens on the horizon (still in later phases of clinical trials or off label use for the most part) available only for boys which focus on prolonging the window of puberty. it's called AI (aromatase inhibitors) - it basically stops the breakdown of testosterone into estrogen and so therefore limits the estrogen-mediated skeletal maturation that signals the end of puberty. so far it looks somewhat promising for treating both primary and secondary GHD as well as other types of short stature or failures in linear growth - but only in boys for obvious reasons. there is limited data and sample sizes in children right now. the drugs are approved for several other indications in adults, but thus far not FDA approved in pediatrics AFAIK. the biggest concern i've read about thus far is that inducing closing of the growth plates is not the only thing estrogen does in boys during puberty - so by inhibiting it, you are effecting more than just their bone maturation. our pedi endo (2 years out of stanford fellowship, so very up to date) said there are groups currently looking at this and also looking at developing more specific/targeted AI's that might do a better job of only effecting that one action at the growth plate. i'm sure that's years off tho - maybe in time for our younger boys, but likely not the older ones??

hope that helps. feel free to pm or email me. i've btdt and then some on this subject.

[karstmama]

lori, that was a lovely write-up. thank you for the time you put into it.

my son is small, but starting to grow on his own, and he's small because he was a micropreemie with a lot of early health issues. we go to a ped endo (earlier for his synthroid management, but he's off that now) for his growth, but so far all they're doing is following. i'm thinking we might get divorced at our next visit if he's tracking 25%ile like he was at his december ped visit. (he's been under the curve, then touching it, then 3rd, then 8th. still, he's 5, so we were told waiting to see was the proper thing to do.)

[deborah_r]

WOW! Thank you Lori! I need to read that all through again, but that was all very helpful. You have a pretty amazing understanding of all of this.

I think the 3rd set of results we are waiting for might be the IGF things you mentioned. The labwork order had 3 different things listed: celiac, growth hormone, and something with a lot of letters/numbers which I think was the IGF etc you mentioned. Results so fAr, negative for celiac, growth hormone low, waiting on the other results.

My boys do grow, it is just very slowly. It's not unusual for them to be able to wear the same pair of shoes for 9 months to a year.

I will contact you if I have more questions, thanks!

[lovin2shop]

General question for those that have BTDT, at what percentage does GHD come into question? Or is more indicated by dropping growth percentages? My DS#2 is short, but has generally tracked at the 25% percentile. However, we go in next week for his 4 year check up, and I'm going to guess that this has dropped, maybe even significantly. He is noticeably shorter than his peers, and stills wears a size 2T in pants. None of this has been alarming since my DH is 5'7 and I'm 5'3, but it's just been of growing concern to me recently with not having to buy any new pants this whole year (although he is longer in the torso and has been outgrowing shirts recently). I'm just hoping to be prepared for the appointment next week if this is an issue, and I would like to know the right questions to ask from the get go. I've found this discussion so helpful already!

[shilo]

General question for those that have BTDT, at what percentage does GHD come into question? Or is more indicated by dropping growth percentages? My DS#2 is short, but has generally tracked at the 25% percentile. However, we go in next week for his 4 year check up, and I'm going to guess that this has dropped, maybe even significantly. He is noticeably shorter than his peers, and stills wears a size 2T in pants. None of this has been alarming since my DH is 5'7 and I'm 5'3, but it's just been of growing concern to me recently with not having to buy any new pants this whole year (although he is longer in the torso and has been outgrowing shirts recently). I'm just hoping to be prepared for the appointment next week if this is an issue, and I would like to know the right questions to ask from the get go. I've found this discussion so helpful already!


usually a child who is maintaining their own curve, even a low one (and 25% is not low ;)) would not be referred to the pedi endo. a trend of serially crossing percentiles at subsequent appointments, even for a kiddo in the upper percentiles, but certainly the lower ones often would be. a significant consideration the pedi/pedi endo takes into account is the child's 'genetic potential.' it's hard to say what % would be indicative of a true GHD b/c every child starts out with their own genetic potential... but in general, there's certainly a statistically significant cohort of kiddos down in the sub 3rd% who test significantly deficient in GH for a whole host of reasons. but there are some kiddos down in that 1-3% who are perfectly healthy in every way including producing appropriate amounts of GH who are just 'made' small ;) - my DS2 is certainly trending this way - at 3.25 he's just now starting to outgrow 18-24mos pants and moving into 2T. 'genetic potential' in reality is not just the final height achieved by you and your husband, but also if there is a history of early or late onset of puberty in the family, or if you or your husband are the outliers in your own families (i.e.. everyone else in your generation was taller but you both were not), or even body proportions. my own DH is not tall, but he also carries a significantly greater proportion of his height in his trunk. if his leg length matched proportionally with his trunk length he'd have been a good 3 inches or so taller - his dad is built the same way, as is his granddad. i, on the other hand, am very short waisted. altho i am also not tall, my legs are somewhat longer for my 5' frame than would be expected according to the charts. so all that to say, if you or your husband (or it's a common trait in the family) carries more of your height in your trunk and that's the way your son is trending, it's probably just the way he's made ;).

if either of your mother's happened to keep your records from childhood (like a baby book), you (and your docs) might gain some insight from how you and your husband grew as children.

in terms of what to expect, if he's still tracking his curve, great. if not, i'd ask for some serial appointments to officially monitor and document his height. at 4, that would be every three months. once you have a few data points to see what the trend over time is, you and your pedi can decide if it's time for a visit to a pedi endo. the endo would look not just at the actual % number, but also at the actual growth velocity. there are tables that look at how many cm per year children grow on average at given age ranges. the endo would be unlikely (IME, YMMV) to initiate more invasive testing without seeing a trend of concern in that velocity over time. kiddos in those middle years (3-9ish) who are small but haven't shown up with a significant growth pattern of concern as infants/toddlers aren't cases that you're really worried about taking time to really see what's going on. meaning getting in quickly to the endo and getting it worked up with relative expediency is not super important for a positive long term outcome. getting 6 or 9 months of data points first and then initiating testing if needed would not adversely effect his final height if he did wind up needing to go on some form of therapy... does that make sense? i know the 'wait and see' is not easy advice. when we're worried as mamas, we want to fix it and fix it now. but growth by it's nature is a thing of time.

hth,

[lovin2shop]

Thank you, Lori! This is all very helpful information, and it's nice to know going in what to expect if there might be a problem.

[lovin2shop]

Bumping for mermanaid!

Also, updating since I forgot to come back to this thread after posting. It was great news, my DS has maintained his growth curve which his Ped thinks is perfectly fine! I really thought he had declined a lot, so I'm glad that I was quite off in that observation!

[anamika]

Thanks Lori and others and thanks Deborah for bringing this up.
I just posted about my DD - she is also tracking 3 years behind according to the bone age test. It was this post that gave me the final push to get DD evaluated.
DD has always tracked at 1% (except for the first year when she fell from ~25% to below the charts - but that was a different issue). So we are waiting for 6 months to do the next scan and then we will reevaluate.
I hope everything goes well for you.

[Mermanaid]

Bumping for mermanaid!



Thanks for the bump!