Constitutional Delay of Growth -- Paging Alice and Others With Experience

[SeaConquest]

The results of Sacha's bone age scan came back. He will be 7 in January, but his bone age is 5. The ped ran a battery of hormonal labs as well, and all came back normal. I asked for the test because of his short stature, which is around 10-15%ile. My understanding is that these results indicate that he does not have a growth hormone deficiency, but rather a constitutional delay.

 

The only issue that we are currently having as a result of the delay is that he is not able to make the elite level soccer team that some of his friends are on because he is shorter, slower, and weaker than the other kids his age (who have been playing soccer together since they were 2).

 

I can foresee other issues in the future because he is very accelerated, but looks much younger than his age. So, it might be difficult if he transitions back to a school environment. 

 

My understanding is that the constitutional delay may not only impact the timing of puberty, but also his final adult height. I am 5'4" and my husband is 5'11 -- pretty normal heights. Do you recommend or have any experience with hormone treatment for this condition? Thanks so much for any experiences.

[SeaConquest]

Afternoon bump!

[MinivanMom]

My oldest son was recently diagnosed with constitutional growth delay. He is 10, but his bone age was closer to a 6 yr old. We were expecting this, because he has been below the 3rd% for many years and there is a family history. We finally went through the whole process of testing and diagnosis, because dh (who has no experience w/small stature or late growth spurts) had become very anxious about his size.

 

I think it's reassuring to have the diagnosis, and I don't really foresee any problems. The only issue we sometimes run into is people thinking he is much younger or being super amazed at his academic abilities. We have had fantastically positive experiences with rec sports, where he is always the hardest-worker, and with scouts, where he happens to have an unusually great group of peers. I find men are very positive and supportive. His most positive experiences have been with male coaches and scout leaders. The only issue I've sometimes encountered is ugly comments from moms of tall peers. The only time he's been excluded has been when moms are (over)involved in games or sports and try to exclude him for being too "young". I deal with those on a case by case basis, and I've had to coach ds on how to be assertive about his age in those situation.

 

I don't think growth hormones are routinely used for growth delays. My understanding is that growth hormones would only be used for hormone deficiencies or in situations where the child would not grow otherwise. For a child with growth delays, they are going to grow on their own eventually; it just may not happen until several years after their same-age peers.

 

We are taking a watch-and-see approach, but I would really like to check his bone age again as he gets closer to 13/14. As far as dealing with peers, he is going to be small for a very long time so we are really trying to help him to keep it in perspective. Some get growth spurts early and some get growth spurts late - no big deal. You are much more than your height.

[SeaConquest]

Thank you so much for sharing your experience, and how you have approached it. I read this article, which made me wonder whether we should be more proactive re treatment.

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3475892/

 

 

[MinivanMom]

Wow, that is an intense article, very pro-intervention. Now I feel a little stressed. A few things jumped out at me:

 

"The association of CDGP associated with incompetence and vulnerability, impaired self-esteem, reluctance to participate in athletic activities, social isolation, impaired academic performance, substance abuse and disruptive and suicide behavior have been shown in many, but not all, studies to be significant. In fact, until now the most common reason behind treating these adolescents is psychological stress experienced by the child or his parents."

 

I know there's a strong association with a number of psychosocial problems, but I do wonder how much of that is "referral bias", where kids who are experiencing problems related to their height are more likely to be referred to specialists and receive more intense intervention. I actually turned down a referral to a specialist at Duke earlier this year, because dh and I felt satisfied with a wait-and-see approach for now. We plan to wait and do further testing in 2-3 years as ds approaches puberty. 

 

I had growth delays myself, but, as a girl, I never found it to be a negative situation. Ds has experienced virtually no problems, but he is also a very charming, personable kid; I can't imagine him being bullied or socially isolated. I know two other boys in real life, both are now 15, who also have growth delays: one is on the spectrum and has some social challenges, the other is very popular and athletic. I think my personal bias is toward thinking that familial and social support should be able to alleviate or counteract any potential psychological problems. Perhaps that's a little arrogant in light of the research, but, again, I wonder about "referral bias".

 

"The clinical challenge is to tailor T replacement to induce puberty and optimize total skeletal growth without inducing premature fusion of the growth plate and to avoid any harmful effect on spermatogenesis."

 

I think this has been one of my biggest concerns with intervening: the potential to induce premature fusion of the growth plate. We also have a family history of hitting normal height, so that has also pushed us toward a wait-and-see approach. I had growth delays, but still hit my full adult height (what would have been projected based on the height of my parents) by age 17. That's much later than normal, but I'm actually taller as an adult than my sister who did not have growth delays.

 

If we did not have a family history of late growth spurts, I would probably feel a bit more anxious about just waiting.

[SeaConquest]

My apologies. I didn't intend to stress you out. I just feel unsure about the best course of action. Perhaps, Alice will chime in. I have tons of physician friends, but none are peds. This part jumped out to me as well:

 

"The association of CDGP associated with incompetence and vulnerability, impaired self-esteem, reluctance to participate in athletic activities, social isolation, impaired academic performance, substance abuse and disruptive and suicide behavior have been shown in many, but not all, studies to be significant. In fact, until now the most common reason behind treating these adolescents is psychological stress experienced by the child or his parents."

 

My son is very social and outgoing, but I worry about his mental health given my family history. I went through puberty at 13, which I think was pretty normal at that time. My husband recalls being more of a late bloomer. I just don't want my son to go through unnecessary feelings of inadequacy if this is something that is treatable, ya know?

 

Thanks again for sharing your thoughts. 

[Xahm]

I don't know if this is relevant, but my brother was slow to grow, always looking several years younger than peers, and he hated it. After he started wrestling, though, he realized he liked being small but strong. He learned to value physical skill over size. Maybe involvement in a sport with weight classes would allow your son to be competitive with peers and gain confidence.

By the way, my brother never got a dx, though if he had been half an inch shorter at any point he would have had tests done. At the time, I think he would have jumped at a pill to help him grow, but he has since said he's glad that he didn't get such intervention. He's about 5'8 adult height.

[MinivanMom]

I think this is a really hard thing to deal with, because there really isn't one single, right course of action. You can hear anecdotal stories about kids who finally grew, but it feels like a big gamble with your own child.

 

It's been interesting for me to see two friends (the ones who each have a 15-yr-old) go through it before me. One has been very laid-back about the entire thing and hasn't pursued any medical intervention beyond the diagnosis. The other has been more stressed about it and has been taking her son to a specialist (pediatric endocrinologist?) at Duke. The specialist has advised against growth hormones or other interventions for constitutional growth delay, because - I may not be putting this in the precise medical terms - because the young bone age indicates lots of room in the growth plates. In other words, as long as he is still growing and the growth plates are still not close to being closed or fused, then they want to let him grow naturally. My understanding is that if you are going to treat with growth hormones, then you are trying to hit it right in that window before the growth plates close.

 

From that viewpoint, the young bone age is a reassuring diagnosis for a child below the growth curve. They would be more concerned about small stature if there wasn't much room in the growth plates, because the window for additional growth would be smaller.

[AimeeM]

I'm listening in.

DS6 had normal bone age scans, but is VERY small for his age, and some of his features are disproportionate. He is 6 and around 33 lbs - a whopping 5 lbs bigger than his 3 year old brother (who is also small for his age). 

Like your kiddo, he is slower and weaker than other children his age - and just much, much smaller. 

We do have growth hormones on the table, because DS' Endo told us to consider it, but we're concerned - he's been through a lot medically already (he has other congenital defects) and we've heard the shots are painful (he already "hurts" almost frequently, and always when very active).

 

So, no advice, just commiseration. 

[AimeeM]

Ah. That would explain why they did feel DS6 would be approved for the growth hormones. He is the size of a child half his age, even though his bone age is normal. 

I think this is a really hard thing to deal with, because there really isn't one single, right course of action. You can hear anecdotal stories about kids who finally grew, but it feels like a big gamble with your own child.

 

It's been interesting for me to see two friends (the ones who each have a 15-yr-old) go through it before me. One has been very laid-back about the entire thing and hasn't pursued any medical intervention beyond the diagnosis. The other has been more stressed about it and has been taking her son to a specialist (pediatric endocrinologist?) at Duke. The specialist has advised against growth hormones or other interventions for constitutional growth delay, because - I may not be putting this in the precise medical terms - because the young bone age indicates lots of room in the growth plates. In other words, as long as he is still growing and the growth plates are still not close to being closed or fused, then they want to let him grow naturally. My understanding is that if you are going to treat with growth hormones, then you are trying to hit it right in that window before the growth plates close.

 

From that viewpoint, the young bone age is a reassuring diagnosis for a child below the growth curve. They would be more concerned about small stature if there wasn't much room in the growth plates, because the window for additional growth would be smaller.

 

[MinivanMom]

Ah. That would explain why they did feel DS6 would be approved for the growth hormones. He is the size of a child half his age, even though his bone age is normal. 

 

Yes, young bone age is what they are looking for with a growth-delayed child. There is a lot more concern with normal bone age, because then it is doubtful that the growth is going to happen on it's own.

 

Are you seeing a pediatric endocrinologist? I know there isn't always a diagnosis in situations like this, even after full work-ups and second-opinions, but I think I would personally be really stressed over the hormone decision without some kind of an explanation or theory for the delayed growth.

[AimeeM]

Yes, young bone age is what they are looking for with a growth-delayed child. There is a lot more concern with normal bone age, because then it is doubtful that the growth is going to happen on it's own.

 

Are you seeing a pediatric endocrinologist? I know there isn't always a diagnosis in situations like this, even after full work-ups and second-opinions, but I think I would personally be really stressed over the hormone decision without some kind of an explanation or theory for the delayed growth.

We do have a ped's endo... and a cardiologist, a pulmonary, and a geneticist. 

When he was much younger, the delayed growth was assumed to be a product of his known congenital defects (heart, lung, vascular), however, eventually those resolved (one on its own; the other two with surgery). Even though he has several other physical "oddities", nobody has been able to nail down a DX, other than "delayed growth" and his other medical (which, though technically resolved, are still things that they watch for, because there is a possibility of him having related problems with his heart and lungs again, down the road). 

He also recently was seen by a pediatric ortho. No official DX, although similar abnormalities regarding his growth and overall physical features were noted (slight curve in the spine, slightly bowing legs, flat feet, short legs, long torso, something about his chest features, short neck, lower set ears, abnormally shaped and abnormally large head). Noonan's was considered as a possibility and then discarded as a possibility. 

His cardiologist finds him "curious" enough that he keeps him on his patient list and sees him regularly even though, at one point, we were discharged from Cardio.

And that's the story of this particular kid's life - "curious". 

We wouldn't make this decision (growth hormones) for at least another couple years. I more concerned with the pain than I am with how tall he'll be - his legs, back, feet, and neck hurt often enough that he has to have ibuprofen with some (relative) frequency. 

[PinkyandtheBrains.]

 

 

My youngest was diagnosed a couple years back with constitutional growth delay. He is around three years behind. He is regularly monitored for growth. As long as he keeps growing at a steady rate the doctors are not advocating intervention. They expect he will just be a "late bloomer".

 

That said, there is a small chance he might not grow to an average height. Most of the time his small size hasn't bothered him, it has even helped him out. He landed a lead in a play because he was older but could play a young character.

 

If at some point it looks like he isn't growing at a steady rate, then we will look into further options.

[Ottakee]

 

His cardiologist finds him "curious" enough that he keeps him on his patient list and sees him regularly even though, at one point, we were discharged from Cardio.

And that's the story of this particular kid's life - "curious". 

 

That fits with out diagnosis of "hmmmm, interesting".  We saw several specialists across the state and that was our working diagnosis for years.

[MeaganS]

We went through this with my oldest a few months ago. We are a tall family. I'm 5'10 and dh is 6'3" and she is in the first percentile for her age. Her 4 yo sister is an inch or more taller than her at this point.  There are no short people on either side of our family.  I was very concerned, so I requested a referral to an endocrinologist from our ped. She told me it was nothing but humored me. When we saw the endocrinologist, she didn't think it was anything either, but went ahead and did the bone scan, which showed that she was near her age. This was bad news because it meant that she wasn't delayed, she simply wasn't growing very much on her own. Based on the bone scan, she was projected to only grow to about 4'10" compared to 5'7" which was her projected height based on our family. After a genetic test ordered as a result of the bone scan, she was diagnosed with Turners Syndrome, which was completely surprising to us. I'm so, so glad I found out because now that we know about Turner's, she has had other health scans and we have found some issues with her heart that we would have had no idea about and could have been deadly in her late teens early 20s if we remained unaware. 

 

Now she is on growth hormone shots daily in an effort to help her grow as much as possible before puberty (which will have to be medically induced thanks to the Turners).  The shots themselves are not a big deal, if a little of a pain. They have to be refrigerated and we can only get them from a mail-order pharmacy and I have to be available to sign for them every 3 weeks when they come in a refrigerated cooler. She got over her fear of shots within two days with the help of Oreos. Messing with growth hormone makes me very nervous, and I am by no means a non-intervention mom. I wouldn't do them unless I thought that she would be inhibited in life permanently. Her dosage of gh is very high compared to non-Turners kids because in her case it isn't a matter of not producing gh, but a matter of not absorbing it efficiently.  The fact that gh can encourage cancer that is already there to grow at an accelerated pace makes me nervous, but that may mostly be because a close friend recently lost her young son to leukemia. DD has no signs of cancer, but I'd hate to make it worse if it turned out she did have some form of cancer, so this decision wasn't made lightly.

 

Really, for her, I'm not actually that sad that she's small for her age. She has enough social delays and even a diagnoses of autism (that may or may not be correct) that being small for her age can only help when it comes to people's expectations. From what I've read, life can be much harder in our society if you aren't at least 5 feet tall, so that is my goal for her.  I would definitely feel more concerned if she was a boy and neurotypical. Expectations are so different for boys. Since Turners Syndrome is girls only, it won't apply to your son, but I do encourage at least getting a workup to rule out anything unexpected like that. Turners wasn't on our radar, but I'm glad we found out as growth problems are often one of the only symptoms until puberty doesn't show up.

[sangtarah]

Our daughter received a diagnosis of constitutional growth delay at age 7. He bone age was 5 at that time. Now at age 9 she is lower in weight than her 6 year old sister, though a little taller. She also has Hashimoto's hypothyroidism. Her weight has been monitored by the endocrinologists and they are pleased with it, although I am not. She almost reached 49 pounds 4 or 5 months ago; now she is a solid 46.  :thumbdown: The thread on high calorie food/snacks is very interesting to me right now. We may re-visit our pediatrician if she doesn't turn around soon. 

 

Neither of her endos have suggested treatment. They have a wait and see approach and as long as she gains weight and height on their scale, they aren't worried about her. They did suggest that puberty may start late, around 14, but didn't mention her final adult height. Honestly, her paternal grandma is only 5'2 and my grandma is 5'1, so we suspect she may have the short gene anyway. 

 

Recently she has told me that she sees several advantages to her smallness - she can carry around stuffed toys without people judging her, and she can fit into small hide-and-seek spaces.  :lol: I hope she continues that outlook! I am happy that we have continued to homeschool her - I'm not sure what her reception would be at ps. We visited a church once that had age-based sunday school classes and ALL the girls in her age group looked huge (comparatively). They also were not very friendly to her. Our current church has a wider age grouping (like 3rd-6th for Sunday school) and she seems to be fine there. 

 

Best wishes, OP, for your ds. These decisions are hard. 

[MinivanMom]

It must be so frustrating to be left with only "curious" or "interesting" instead of having a firm diagnosis.

 

We went through this with my oldest a few months ago. We are a tall family. I'm 5'10 and dh is 6'3" and she is in the first percentile for her age. Her 4 yo sister is an inch or more taller than her at this point.  There are no short people on either side of our family.  I was very concerned, so I requested a referral to an endocrinologist from our ped. She told me it was nothing but humored me. When we saw the endocrinologist, she didn't think it was anything either, but went ahead and did the bone scan, which showed that she was near her age. This was bad news because it meant that she wasn't delayed, she simply wasn't growing very much on her own. Based on the bone scan, she was projected to only grow to about 4'10" compared to 5'7" which was her projected height based on our family. After a genetic test ordered as a result of the bone scan, she was diagnosed with Turners Syndrome, which was completely surprising to us. I'm so, so glad I found out because now that we know about Turner's, she has had other health scans and we have found some issues with her heart that we would have had no idea about and could have been deadly in her late teens early 20s if we remained unaware. 

*snip*

 

I just want to emphasize to anyone reading along that it is very important to have a full workup in order to screen for other possible conditions. Don't just assume that your child is a late-bloomer or that he/she will grow eventually.

 

A diagnosis of constitutional growth delay is made with the confirmation of bone age, and that bone x-ray is done after screening for just about every other thing it could be. My ds was screened for growth hormone levels, thyroid levels, and just about every imaginable underlying genetic or digestive disorder you can think of prior to even getting the bone scan. It was very reassuring to get back endless reams of "normal" test results. It's the absence of other issues . . . combined with bone age, family history, and steady growth below the 3rd percentile that leads to a diagnosis. Even then - and even if you aren't planning to intervene - it is still common to monitor the growth plates as a child enters (or passes) the normal age of puberty.

[MinivanMom]

Oh, and as someone who had growth delays myself and didn't reach my full height (*almost* 5' 4'') until I was 17, short is awesome. I think it can be much harder on boys to be short as teens, but I never had any problems as a girl. As a girl you are "tiny" and "cute" and everything you do seems so mature and precocious. And you are always shorter than *all* the boys.

[MeaganS]

It must be so frustrating to be left with only "curious" or "interesting" instead of having a firm diagnosis.

 

 

I just want to emphasize to anyone reading along that it is very important to have a full workup in order to screen for other possible conditions. Don't just assume that your child is a late-bloomer or that he/she will grow eventually.

 

A diagnosis of constitutional growth delay is made with the confirmation of bone age, and that bone x-ray is done after screening for just about every other thing it could be. My ds was screened for growth hormone levels, thyroid levels, and just about every imaginable underlying genetic or digestive disorder you can think of prior to even getting the bone scan. It was very reassuring to get back endless reams of "normal" test results. It's the absence of other issues . . . combined with bone age, family history, and steady growth below the 3rd percentile that leads to a diagnosis. Even then - and even if you aren't planning to intervene - it is still common to monitor the growth plates as a child enters (or passes) the normal age of puberty.

 

That's interesting. In our case, the bone scan was the first thing they did and all other tests were done after that. Immediately following our first appointment with the endocrinologist, we walked over to the part of the children's hospital that did x-rays. This was after her saying it was probably nothing, but lets get a bone-age just in case.

 

I absolutely agree that it could be nothing... or it could be something and especially after our experience, I'm glad I followed through. :)

[rebbyribs]

Thank you - I'd never heard of this, but reading more, it sounds like something I experienced.  

 

My husband and I both hit puberty late, with my main growth spurt being at 14 and his at 17-18.  We're both from tall families though, so we were more on the shorter side of average for a while and then grew to above average heights late in the game.  (We're both 6'1" now.)  For a while, my parents thought that I was just going to be petite, like my father's aunts.  Then as my height approached 6', they started talking about having me start hormone treatment to stop the growth spurt and bring on the rest of puberty.  I happened to sprain my ankle around this time, and the X-ray to make sure it wasn't broken revealed that my growth plates had almost closed.  

 

 Our oldest has gone from being a big baby and a tall toddler, to more average height as she's gotten older, and she didn't lose her first teeth until 6.5 years. I'm expecting her to be a late bloomer.  I can see how late puberty would be especially difficult for boys who like sports and kids who are from an average height or shorter family and go through a period of being the shortest one in their peer group.

[SeaConquest]

Thanks to everyone who has contributed for sharing your experiences. The ped ran a urinalysis, free T4, phosphorus, lipase, glucose, erythrocyte sedimenation rate, electrolytes, creatinine, calcium, blood urea nitrogen, AST, amylase, ALT, TSH, and a CBC. All normal. Then, the bone study, which resulted in the CDGP dx.

 

If he was a girl, I would not be as concerned about his adult height. But, I am concerned for him as a boy. I once remember reading somewhere that they polled women on online dating sites about various characteristics, and being a short man was the worst trait to have -- worse than being overweight or poor, or a variety of other superficial things. I recognize that this is a shallow thing to worry bout in the grand scheme of life, but if there is a way to prevent it from being an issue, I would seriously consider treatment for him. 

 

Thank you again for sharing your thoughts.

[Ottakee]

 

If he was a girl, I would not be as concerned about his adult height. But, I am concerned for him as a boy. I once remember reading somewhere that they polled women on online dating sites about various characteristics, and being a short man was the worst trait to have -- worse than being overweight or poor, or a variety of other superficial things. I recognize that this is a shallow thing to worry bout in the grand scheme of life, but if there is a way to prevent it from being an issue, I would seriously consider treatment for him. 

 

 

I do think it is something to be considered, esp. in American.  In West Michigan, we have a VERY tall population.  I at 5'5" tall am a short woman.  Most men are over 6' and 6'6" isn't that uncommon.

 

I think that a very short boy does have a lot of social challenges to face.  Our youth pastor is about 5'3" tall and has done great and has a great attitude, etc. but I am sure his teen years were NOT easy at all.

 

If your son is still only 6 you likely have some years where you can watch and wait and keep checking with the peds endo (we did every 6 months for years).  We did decide NOT to do GH for our older dd.  She is now 4'9" (4'10" at the very most).  She is short and some things were hard for her. As a girl though we were OK with that, esp. as she has special needs and it can be helpful to be smaller.  Also, the risk with GH were not to be negated as she has 3 mitochondrial disorders which put her at high risk for cancer, etc.  It is a risk/benefit game and it can vary from child to child what is best.

[AimeeM]

That's interesting. In our case, the bone scan was the first thing they did and all other tests were done after that. Immediately following our first appointment with the endocrinologist, we walked over to the part of the children's hospital that did x-rays. This was after her saying it was probably nothing, but lets get a bone-age just in case.

 

I absolutely agree that it could be nothing... or it could be something and especially after our experience, I'm glad I followed through. :)

Same here. The first thing the Endo (who we were sent to by either our Pediatrician or our Cardio, I can't remember which) did was order some blood work and a bone scan (two types, I think - a full skeletal survey, I think because of the other physical abnormalities, and a bone-age). 

It wasn't until we got "normal bone age" that we were sent to a geneticist.

 

 

[sangtarah]

 

I just want to emphasize to anyone reading along that it is very important to have a full workup in order to screen for other possible conditions. Don't just assume that your child is a late-bloomer or that he/she will grow eventually.

 

A diagnosis of constitutional growth delay is made with the confirmation of bone age, and that bone x-ray is done after screening for just about every other thing it could be. My ds was screened for growth hormone levels, thyroid levels, and just about every imaginable underlying genetic or digestive disorder you can think of prior to even getting the bone scan. It was very reassuring to get back endless reams of "normal" test results. It's the absence of other issues . . . combined with bone age, family history, and steady growth below the 3rd percentile that leads to a diagnosis. Even then - and even if you aren't planning to intervene - it is still common to monitor the growth plates as a child enters (or passes) the normal age of puberty.

 

 

I agree with this. My dd was tested for many, many things before the bone x-ray. 

[Soror]

I find this interesting my son is maybe the 10% and my youngest isn't on the charts. I've talked to the GP a few times and he is non-pulsed as otherwise she is fine. I have concerns as a person with thyroid disease and a huge family history of thyroid disease on both sides of the family.

[sbgrace]

Who do you see about that? Do I? Advice?

When my son was a toddler he had a wrist x-ray for an injury. The ortho mentioned that he was bone growth delayed. I had a lot going on at the time with his twin's health, and didn't ask if I needed to do anything to follow up.

He's curently entering puberty, 11, and has a projected height of 5'7 on the current growth curve the ped told me at his well check. I am 5 6, hubby ifs 510. Ped said he's within expected height for us. I think my husband's brother had a really late growth spurt. So maybe he'll follow suit.

 

Do I do anything? Is it too late anyway?

[MinivanMom]

Who do you see about that? Do I? Advice?

When my son was a toddler he had a wrist x-ray for an injury. The ortho mentioned that he was bone growth delayed. I had a lot going on at the time with his twin's health, and didn't ask if I needed to do anything to follow up.

He's curently entering puberty, 11, and has a projected height of 5'7 on the current growth curve the ped told me at his well check. I am 5 6, hubby ifs 510. Ped said he's within expected height for us. I think my husband's brother had a really late growth spurt. So maybe he'll follow suit.

 

Do I do anything? Is it too late anyway?

 

If he's on the growth charts, then there are probably no concerns. I wouldn't feel any concern if he's entering puberty already at 11 and the pediatrician is projecting 5'7 on his current growth curve. If the pediatrician doesn't have any concerns, then there probably isn't any reason to worry.

 

There would be concerns if a child was below the 3rd percentile or was not growing from year to year. If there are concerns then your pediatrician can do initial bloodwork, but it's common to be referred to a pediatric endocrinologist.

 

Was your son a preemie? If he was a preemie, then I would wonder whether the ortho was basing his observation of "bone growth delayed" on your son's actual birthdate rather than his adjusted age.

[Alice]

The results of Sacha's bone age scan came back. He will be 7 in January, but his bone age is 5. The ped ran a battery of hormonal labs as well, and all came back normal. I asked for the test because of his short stature, which is around 10-15%ile. My understanding is that these results indicate that he does not have a growth hormone deficiency, but rather a constitutional delay.

 

The only issue that we are currently having as a result of the delay is that he is not able to make the elite level soccer team that some of his friends are on because he is shorter, slower, and weaker than the other kids his age (who have been playing soccer together since they were 2).

 

I can foresee other issues in the future because he is very accelerated, but looks much younger than his age. So, it might be difficult if he transitions back to a school environment. 

 

My understanding is that the constitutional delay may not only impact the timing of puberty, but also his final adult height. I am 5'4" and my husband is 5'11 -- pretty normal heights. Do you recommend or have any experience with hormone treatment for this condition? Thanks so much for any experiences.

 

Hi, SeaConquest, I just saw your PM. We started school yesterday so I've been away from the computer. 

 

Have you all seen a peds endocrinologist or just your pediatrician? 

 

If all his tests were normal and he has a delayed bone age, it does seem to meet the criteria for constitutional growth delay. With CGD, by definition an individual should end up still within their predicted genetic height range. What is effected more usually is the timing of puberty and when their growth spurt is. Traditionally these kids are "late bloomers". That said, some studies do suggest that kids with CGD end up on the lower end of the predicted range. So, for your son the predicted range would be 5'8" to 6 feet (you add 5 inches to Mom's height for a boy and then average it with Dad's height...2 inches on either side of that midpoint is considered the "genetic potential"). As a doctor we would say that he is growing as expected if he ends up 5'8" (or even 5'7" since the prediction isn't perfect) but 5'8" obviously FEELS very differently to an adult male than 6 feet. 

 

As I'm sure you've read there is a lot of controversy and uncertainty about treating with growth hormone for constitutional delay or short stature. There are risks of GH: cancer (particularly bone cancer and leukemia), early stroke and possibly type II diabetes. The risks are usually later in life, not during treatment. Some of those are theoretical risks but some early studies in small groups have seemed to confirm them. 

 

The other downsides are cost and daily shots. Cost is not a small thing. Most of the time insurance does not cover (or doesn't cover fully) GH unless there is a documented GH deficiency or a predicted adult height less than 3%. Growth hormone on average gets 2 inches more than you would get on your own so one way to look at it is $35,000-$50,000 an inch when all is said and done. The shots are also not a small issue for most kids. I have one patient with true growth hormone deficiency who is a teenager and who is refusing the treatment because he just can't deal with the daily shots for two or three years. 

 

I think the opinion of most experts is that unless you have a true growth hormone deficiency, they don't advise treatment for a kid who is going to end up in the normal range for adults, even if that is on the short end of normal. I typically agree with that. I don't think I would do it for one of my kids (I say that as someone who is short myself, although I know the cultural issues are greater for men). 

 

However, if you haven't already seen an endocrinologist, it's probably worth doing that. They can give you a much more up to date view of the risks and benefits. They could also talk about the possibility of doing testosterone therapy to "jump-start" puberty. That can be done to help those with CGD who are late bloomers. That way instead of starting puberty and growing at age 17 or 18 at the end of high school they can start at 14 -15. It has some of the same issues around it as growth hormone but has the advantage of being a much shorter therapy (I think 3 or 4 shots) and of being much cheaper, and probably safer.

 

I didn't see that you all actually had GH tested. It might be worth doing that also, even though the bone age is delayed. Especially if you are considering therapy, it would be good to know. 

 

Since your son is only 6 I think you have time to think about it regardless. Personally, I would not recommend doing GH for a kid that age with no deficiency because so many things can happen with growth. I would continue to watch their growth and see as they get older. 

[AimeeM]

I find this interesting my son is maybe the 10% and my youngest isn't on the charts. I've talked to the GP a few times and he is non-pulsed as otherwise she is fine. I have concerns as a person with thyroid disease and a huge family history of thyroid disease on both sides of the family.

Neither of my sons are on the charts... but only DS6 has been a concern. Why? Because DS3, despite being tiny, is growing consistently - DS6 isn't.

[Cammie]

My DS 10 is not on the growth chart...and hasn't been for some time!

 

We have been seeing a pediatric endo and have had bone age scans done over the last few years.

 

Every scan showed at least one year of growth delay.  All blood tests are normal.  The Endo sees a lot of growth hormone deficiency cases and said that she was ruling it out completely.  In those cases there are other markers like actually appearing a little chubby in comparison to height.

 

I did worry about self-esteem issues, etc.  However, his predicted hight is about 5'6" and to us that is just fine (remember, we live in India....not the worlds tallest people!)

 

One reason we have not changed his schools is that my son has the HEALTHIEST ego and self-esteem.  No one comments on his height at school.  The only time it is an issue is with new people who assume he is MUCH younger than 10.

 

My feeling is that he will end up like a Tom Cruise guy - super cute, super charismatic and short.

[Monica_in_Switzerland]

More personal anecdotes:

 

My second dd, age 3, has been seeing a ped end since 15 months.  She is so far off the charts it's crazy.  If you put a finger on her dot (well below the curve) and move it to the left (going down in age), the first place she hits the curve (5%ile) is for a child 1.5 years younger than her.  

 

What we've done so far:

 

- bone scan: about 6 months "young", but the standard deviation for bone age scans is very large, making it virtually unusable for very young kids

- genetic test- negative for Turner's

- GH Stim test- NEGATIVE.  This was crazy, as she has other signs of GH deficiency, notably low muscle tone.

- blood panels- normal thyroid function, etc.  

- gluten antibodies- negative.  Her brother has celiac's, but she does not show positive in her blood test and has no symptoms, so she probably doesn't.

 

 

What we haven't yet done:

- genetic tests for certain forms of dwarfism (Fairbanks (MED) is a possibility, she was born with club feet, but her body proportions are currently normal)

- repeat of GH sim in a year or two

- MRI of thyroid

 

 

Where we live, GH is very highly regulated.  You CANNOT get it unless you have a documented deficiency.  

 

I don't mean it in a harsh way, but some people do, be definition, fall in the 1-10% range in height, that's just how statistics work.  If we give GH to those people, then those at the 20%ile point will then feel "short" and want GH, and so on, and so on.  I say that as a very short person (5ft1in).  :-)  

 

I don't know where things will go for my dd.  Her last end appt showed that her growth velocity had picked up a bit so we are back to "wait and see" with an appt in October.  

 

In the mean time, little baby, also born with clubfeet, also just fell off the growth charts at his 1 year ped appt, just like dd did.  So there may very well be a genetic component or a syndrome of some kind at play.  

 

At this point, I'd be so happy to have constitutional growth delay as a dx, because as hard as it might be to "live it", there is nothing actually "wrong" with the child.  

 

[MistyMountain]

I thought the bone age being younger when you are shorter is just a sign that puberty will hit late and that there is plenty of time to grow left.

 

All my kids are short but my oldest is barely on the charts for height. My ds who is 2 years younger and not tall for his age is nearly her height. She is much shorter then kids her age and seems to fit in height wise with kids 2 years younger. A lot of kids her age are hitting growth spurts so the difference seems to grow over time. I was always on the short end growing up but hit puberty late and grew to an average adult height. My brother was the nearly the shortest and is 6 feet. I have a cousin who had a winter birthday and started school late. He was the shortest kid in his grade even though he was older. At graduation they lined kids up by height and he was in the back and was the tallest. My dh was also a late bloomer. He was so much younger looking and shorter then the other kids in his grade in 8th grade. He is 5 foot 11 now. His other siblings were not late bloomers. I have never really been worried about dd because she just seems to be maturing later.

 

All of that is anecdote of course but being a late bloomer is a very normal thing to happen. The 10-15 percentile is not too bad. My ds is just slightly above that. In general if you hit puberty late you have more time to grow and can end up taller. Late bloomers do tend to develop in sports later too. I know a lot of coaches probably write of late bloomers but once a late bloomer hits their spurt they can also become stronger players. It probably helps them to have to work hard in the mean time if they can just manage to stay and compete even if when they are younger they just do not have the same strength as the bigger kids.

[MinivanMom]

I thought the bone age being younger when you are shorter is just a sign that puberty will hit late and that there is plenty of time to grow left.

 

*snip*

 

Yes, at the heart of it "constitutional growth delay" is just a fancy medical term for getting growth spurts late. However, getting the diagnosis means that you've ruled out any growth hormone deficiency or any underlying disease or genetic disorder that could be causing short stature, and it means you have confirmed the prediction of late growth spurts via bone age.

 

There is a range of normal: someone has to be below the 3rd percentile in height just as someone is above the 99th, someone is going to get their growth spurts at the end of the bell curve (16-19 yrs) just as someone got their growth spurts at the beginning of the bell curve (8-10 yrs). It's just hard to deal with in the meantime, because there is so much cultural baggage when it comes to height.

 

Like I posted above, I had delayed growth. I remember going in for a ped physical before starting high school and measuring in at 4'9''. The ped just shook his head and said the most additional growth we could hope for was 1-2'' so I would be lucky to hit 4'11. Nobody bothered to run any tests, because I was a girl. I started growing midway through my freshman year and hit 5'4 by age 17. That is smack in the middle of what would be my predicted adult height based on the heights of my parents. With growth delays you should expect to reach your predicted adult height, but the growth is just happening far later than average.

[SeaConquest]

With growth delays you should expect to reach your predicted adult height, but the growth is just happening far later than average.

 

According to the article that I posted above, this isn't necessarily true:

 

"The age of onset of puberty is delayed by an average of 2.5 years in girls and 3 years in boys. Ht deficit at onset of puberty correlates with final Ht. The time between onset of puberty and pubertal growth spurt is shorter than in normal children and the peak growth velocity is attenuated. Therefore, the mean final Ht is usually shorter than both target Ht and predicted adult Ht."

 

Can you imagine being 16 years old, and a foot shorter than everyone else. And still looking like a little boy while the rest of your friends have grown into young men. That's not exactly a trifling issue, IMO.

 

And worse, you may not reach your predicted height at all.

 

"The final Ht lies on average 1.85 SD below the mean of healthy adults, with large individual variations. Better final Ht appears to occur in children who had their slow growth during their late childhood, while those with early and progressive reduction of relative Ht in the early childhood have compromised final Ht."

 

Yes, my son is only 6, but he has been getting shorter and shorter than the rest of the kids -- meaning, his height percentile is going down, not remaining steady. According to this article, this is exactly the kind of kid who is not going to hit his predicted height due to the CDGP. If my husband and I were above the norm for height, it wouldn't be a big deal. But, we are very average height, which puts my son at greater risk for ending up below average.

[SeaConquest]

Hi, SeaConquest, I just saw your PM. We started school yesterday so I've been away from the computer. 

 

Have you all seen a peds endocrinologist or just your pediatrician? 

 

If all his tests were normal and he has a delayed bone age, it does seem to meet the criteria for constitutional growth delay. With CGD, by definition an individual should end up still within their predicted genetic height range. What is effected more usually is the timing of puberty and when their growth spurt is. Traditionally these kids are "late bloomers". That said, some studies do suggest that kids with CGD end up on the lower end of the predicted range. So, for your son the predicted range would be 5'8" to 6 feet (you add 5 inches to Mom's height for a boy and then average it with Dad's height...2 inches on either side of that midpoint is considered the "genetic potential"). As a doctor we would say that he is growing as expected if he ends up 5'8" (or even 5'7" since the prediction isn't perfect) but 5'8" obviously FEELS very differently to an adult male than 6 feet. 

 

As I'm sure you've read there is a lot of controversy and uncertainty about treating with growth hormone for constitutional delay or short stature. There are risks of GH: cancer (particularly bone cancer and leukemia), early stroke and possibly type II diabetes. The risks are usually later in life, not during treatment. Some of those are theoretical risks but some early studies in small groups have seemed to confirm them. 

 

The other downsides are cost and daily shots. Cost is not a small thing. Most of the time insurance does not cover (or doesn't cover fully) GH unless there is a documented GH deficiency or a predicted adult height less than 3%. Growth hormone on average gets 2 inches more than you would get on your own so one way to look at it is $35,000-$50,000 an inch when all is said and done. The shots are also not a small issue for most kids. I have one patient with true growth hormone deficiency who is a teenager and who is refusing the treatment because he just can't deal with the daily shots for two or three years. 

 

I think the opinion of most experts is that unless you have a true growth hormone deficiency, they don't advise treatment for a kid who is going to end up in the normal range for adults, even if that is on the short end of normal. I typically agree with that. I don't think I would do it for one of my kids (I say that as someone who is short myself, although I know the cultural issues are greater for men). 

 

However, if you haven't already seen an endocrinologist, it's probably worth doing that. They can give you a much more up to date view of the risks and benefits. They could also talk about the possibility of doing testosterone therapy to "jump-start" puberty. That can be done to help those with CGD who are late bloomers. That way instead of starting puberty and growing at age 17 or 18 at the end of high school they can start at 14 -15. It has some of the same issues around it as growth hormone but has the advantage of being a much shorter therapy (I think 3 or 4 shots) and of being much cheaper, and probably safer.

 

I didn't see that you all actually had GH tested. It might be worth doing that also, even though the bone age is delayed. Especially if you are considering therapy, it would be good to know. 

 

Since your son is only 6 I think you have time to think about it regardless. Personally, I would not recommend doing GH for a kid that age with no deficiency because so many things can happen with growth. I would continue to watch their growth and see as they get older. 

 

Thanks so much for your thoughts, Alice. I am not sure if you had a chance to check out the article I posted above, but they described several different strategies for treatment beyond growth hormone. The treatments described also seemed to be more effective for CDGP than growth hormone -- as you described, shorter in duration, etc.

 

Thus far, we have only seen our ped. I will talk to him about a referral to a ped endo and suggest that he also check growth hormone.

 

Thanks again for responding. :)

[Carrie12345]

 

 

If he was a girl, I would not be as concerned about his adult height. But, I am concerned for him as a boy. I once remember reading somewhere that they polled women on online dating sites about various characteristics, and being a short man was the worst trait to have -- worse than being overweight or poor, or a variety of other superficial things. I recognize that this is a shallow thing to worry bout in the grand scheme of life, but if there is a way to prevent it from being an issue, I would seriously consider treatment for him. 

 

 

My anecdote: Dh was tested as a kid with borderline results on the growth plates.  His parents did consider hormone options, but decided against them.  He was small for a long time.  He had a ton of friends, played sports (well), and dated plenty of girls.  :toetap05:  He eventually hit a spurt so quick it left stretch marks.

I met him on line and, yes, I was a bit uneasy about his height. And then I met him in person, and he was definitely an inch shorter!  :tongue_smilie:   I married him 7.5 months later, anyway.

 

Honestly, his height can be considered normal, but mine is a bit above normal for a woman and I reached it by 8th grade, so I've always been self conscious about my own stature!  While I wouldn't paint either one of us as the perfect pictures of mental health, lol, we came out pretty okay!

[PinkyandtheBrains.]

I thought the bone age being younger when you are shorter is just a sign that puberty will hit late and that there is plenty of time to grow left.

 

It is, unless testing were to show an additional condition that changes it to a new diagnosis instead of just a constitutional growth delay.

[MinivanMom]

I completely understand why you are feeling so stressed and concerned. If you don't have a family history of this, as many others seem to have, then the diagnosis must be even harder. If you haven't seen a pediatric endocrinologist yet, then I think you really need to go ahead and do that. Your best source for the most current and accurate research and recommendations for your son's particular situation are going to come from an evaluation with a ped endo. If your pediatrician hasn't already given you a referral, then I would personally go back in and request one.

 

*snip*

 

Can you imagine being 16 years old, and a foot shorter than everyone else. And still looking like a little boy while the rest of your friends have grown into young men. That's not exactly a trifling issue, IMO.

 

And worse, you may not reach your predicted height at all.

 

*snip*

 

Yes, my son is only 6, but he has been getting shorter and shorter than the rest of the kids -- meaning, his height percentile is going down, not remaining steady. According to this article, this is exactly the kind of kid who is not going to hit his predicted height due to the CDGP. If my husband and I were above the norm for height, it wouldn't be a big deal. But, we are very average height, which puts my son at greater risk for ending up below average.

 

Very, very gently.

 

Yes, I know exactly what it's like to be more than a foot shorter than everybody else. Obviously, in some ways it can be much harder for a boy, but this does not have to be a traumatic experience. It is okay to be short during your teen years. The two 15-yr-old I know w/growth delays would probably say that it is no big deal. They are very short, but they are doing great. The one who is popular and athletic has had no problems. The one with social challenges (on the spectrum) just performed one of the leads in our high school's spring musical. You may have to rethink your plans for a brilliant NBA career, but gymnastics may have just opened up to you as a great option. It will be okay. 

 

I look at my son, who is now 10, and he really hasn't encountered any social or emotional challenges yet. I do feel that the best thing I have done for him is to be sure he knows that height is no big deal. Some kids get their growth spurts early while some kids get their growth spurts late, but everyone's going to grow eventually. Some will end up taller or shorter just as some are more or less intelligent or athletic or socially adept. Diversity is great!

 

Whatever course you decide to take after consulting with a ped endo, you are going to have to support your son emotionally. He needs to know that he has intrinsic value that does not come from his height. He will need you to be his foundation when he is receiving a different message from his peers or the culture around him. From everything I've seen you post about him, he sounds like a fabulous, intelligent guy. He will be okay. Everything is going to be okay.

[Alice]

Thanks so much for your thoughts, Alice. I am not sure if you had a chance to check out the article I posted above, but they described several different strategies for treatment beyond growth hormone. The treatments described also seemed to be more effective for CDGP than growth hormone -- as you described, shorter in duration, etc.

 

Thus far, we have only seen our ped. I will talk to him about a referral to a ped endo and suggest that he also check growth hormone.

 

Thanks again for responding. :)

 

Yes, I looked at the article. I'm not knowledgable enough in the field to know much about the journal it's published in. A fairly quick Google search brought up other articles that are slightly less pro-intervention.

 

If you read the article you linked it is mostly talking about treating boys around age 14, not as young as your son. They certainly wouldn't use one of the other treatments that induce puberty in a 6 year old. I think at that age the only treatment typically used is growth hormone but I could be wrong about that.

 

I think for a kid who is only 6 and who does not have a diagnosed GH deficiency and who is 10-15% on the chart vs. below 5% that most doctors are not going to recommend intervention at this point. I would recommend watching and waiting for a kid that age. It sounds like this is a big concern for you so I would definitely ask about seeing a peds endocrinologist who can better outline all the different options and help with decision making. In all honesty though, I'm not sure you are really going to have a decision to make yet as at that age I don't know that anyone is going to recommend treatment or if it would be covered by insurance. 

[SeaConquest]

I completely understand why you are feeling so stressed and concerned. If you don't have a family history of this, as many others seem to have, then the diagnosis must be even harder. If you haven't seen a pediatric endocrinologist yet, then I think you really need to go ahead and do that. Your best source for the most current and accurate research and recommendations for your son's particular situation are going to come from an evaluation with a ped endo. If your pediatrician hasn't already given you a referral, then I would personally go back in and request one.

 

 

Very, very gently.

 

Yes, I know exactly what it's like to be more than a foot shorter than everybody else. Obviously, in some ways it can be much harder for a boy, but this does not have to be a traumatic experience. It is okay to be short during your teen years. The two 15-yr-old I know w/growth delays would probably say that it is no big deal. They are very short, but they are doing great. The one who is popular and athletic has had no problems. The one with social challenges (on the spectrum) just performed one of the leads in our high school's spring musical. You may have to rethink your plans for a brilliant NBA career, but gymnastics may have just opened up to you as a great option. It will be okay. 

 

I look at my son, who is now 10, and he really hasn't encountered any social or emotional challenges yet. I do feel that the best thing I have done for him is to be sure he knows that height is no big deal. Some kids get their growth spurts early while some kids get their growth spurts late, but everyone's going to grow eventually. Some will end up taller or shorter just as some are more or less intelligent or athletic or socially adept. Diversity is great!

 

Whatever course you decide to take after consulting with a ped endo, you are going to have to support your son emotionally. He needs to know that he has intrinsic value that does not come from his height. He will need you to be his foundation when he is receiving a different message from his peers or the culture around him. From everything I've seen you post about him, he sounds like a fabulous, intelligent guy. He will be okay. Everything is going to be okay.

 

Thanks, MM. I apologize for coming off like I am freaking out. I'm honestly not. But, I'm clearly not totally zen about the whole thing either. You are right that he is very social and outgoing. He has no problem making friends, even though he is significantly shorter now, and I really don't foresee that changing.

 

As for not making the "elite" soccer team (which is totally ridiculous to even say about 6 year olds, but that's another discussion), it's hard to know whether to chalk that up to the growth delay or to the fact that my son is a bit of a Renaissance man. He has so many extracurricular interests, and I just don't think he wants to specialize at this age -- not that I blame him. He's currently at surf camp, and did theatre, tennis, and fencing over the summer, so it's not really holding him back.

 

I just like exploring all the options in case it does become an issue down the road. So, thanks to everyone for helping me to keep perspective. As I remind myself constantly: gray, gray, gray -- always gray. <3

[SeaConquest]

Yes, I looked at the article. I'm not knowledgable enough in the field to know much about the journal it's published in. A fairly quick Google search brought up other articles that are slightly less pro-intervention.

 

If you read the article you linked it is mostly talking about treating boys around age 14, not as young as your son. They certainly wouldn't use one of the other treatments that induce puberty in a 6 year old. I think at that age the only treatment typically used is growth hormone but I could be wrong about that.

 

I think for a kid who is only 6 and who does not have a diagnosed GH deficiency and who is 10-15% on the chart vs. below 5% that most doctors are not going to recommend intervention at this point. I would recommend watching and waiting for a kid that age. It sounds like this is a big concern for you so I would definitely ask about seeing a peds endocrinologist who can better outline all the different options and help with decision making. In all honesty though, I'm not sure you are really going to have a decision to make yet as at that age I don't know that anyone is going to recommend treatment or if it would be covered by insurance. 

 

Thanks, Alice. I was not considering any interventions at this time. I was more just wanting to explore the possibility down the road, and to gather information/experiences. I really appreciate you sharing your expertise. I will get him to a ped endo, so that I have an expert monitoring him going forward. 

[MinivanMom]

Thanks, MM. I apologize for coming off like I am freaking out. I'm honestly not. But, I'm clearly not totally zen about the whole thing either. You are right that he is very social and outgoing. He has no problem making friends, even though he is significantly shorter now, and I really don't foresee that changing.

 

As for not making the "elite" soccer team (which is totally ridiculous to even say about 6 year olds, but that's another discussion), it's hard to know whether to chalk that up to the growth delay or to the fact that my son is a bit of a Renaissance man. He has so many extracurricular interests, and I just don't think he wants to specialize at this age -- not that I blame him. He's currently at surf camp, and did theatre, tennis, and fencing over the summer, so it's not really holding him back.

 

I just like exploring all the options in case it does become an issue down the road. So, thanks to everyone for helping me to keep perspective. As I remind myself constantly: gray, gray, gray -- always gray. <3

 

You are completely fine. Your world just shifted from, "Huh, he's short," to "What am I going to be dealing with for the next 10 years?!" Your reaction is completely normal. It's a big adjustment.

 

It's easy for me to be zen, because I went through it myself and, honestly, the odds were that at least one of my kids would have a similar growth curve. My husband has not been so zen, but he has adjusted.

 

I really think going to a pediatric endocrinologist will be a great thing. Even if they don't recommend any intervention at this time, it can be really reassuring to have an expert go over all the testing really closely and give you some reassurance and insight into what would be the best course for your son.

[AimeeM]

Yes, I looked at the article. I'm not knowledgable enough in the field to know much about the journal it's published in. A fairly quick Google search brought up other articles that are slightly less pro-intervention.

 

If you read the article you linked it is mostly talking about treating boys around age 14, not as young as your son. They certainly wouldn't use one of the other treatments that induce puberty in a 6 year old. I think at that age the only treatment typically used is growth hormone but I could be wrong about that.

 

I think for a kid who is only 6 and who does not have a diagnosed GH deficiency and who is 10-15% on the chart vs. below 5% that most doctors are not going to recommend intervention at this point. I would recommend watching and waiting for a kid that age. It sounds like this is a big concern for you so I would definitely ask about seeing a peds endocrinologist who can better outline all the different options and help with decision making. In all honesty though, I'm not sure you are really going to have a decision to make yet as at that age I don't know that anyone is going to recommend treatment or if it would be covered by insurance. 

Sounds like what our Endo is doing. Even though our DS6 is not even on the charts (much less in the 10th or 15th percentile), growth hormone treatment is a big enough deal that we're waiting a bit before making that decision. We still need to have the GH test done, too, but we've been told it's very unpleasant, so we're trying to wait until he's in a bit of a better place regarding pain in general.

[Reham]

I’m really curious to know how is the kids doing right now? My 7 years old is on the same boat and I came across this very informative discussion.