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Human Growth Hormone for Short Stature -- Anyone BTDT?


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We have an appointment this week with a pediatric endocrinologist to discuss growth hormone for two of my girls.  They have a genetic birth defect (the same one that I have) that affects their growth.

I am so hesitant to do this, but if we are going to do it we are running out of time.  They are likely not going to reach 5 feet.  (I am actually "tall" for someone with this defect -- I'm 5'3".)

Does anyone here have any experience with this?  Pros and cons?  Questions I should ask the endocrinologist?

Feel free to PM if you don't want to post on the public forum.

Thanks in advance for any replies!

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I opted not to do with with one of mine.  She ended up at 4'10".  It would be nicer if she was at least 5' but it is ok.   Disclaimer.....she has other special needs and won't ever drive, etc.

I know for some conditions the growth hormone helps protect against other future health concerns.   Certainly pick the brain of your Endo.   

You are right though, there is a time frame where this needs to be done 

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We decided against it, though my PP was pushing hard. She actually ended up at 5'6"! She had a slow growth trajectory, but was still growing. She stayed at the 3rd percentile for many, many years. I was worried about the unknown side effects. For us, it worked out. She is the shortest of my kids. We never got as far as the endo consult. She's 27 now (well, next week!)

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My youngest is an itty-bitty. We were never able to convince a doctor to get us to the endo even though she has been considered short stature since she was 2. She has run from below the 1st percentile to the 3rd percentile her entire life. She is 13 and 4'7 1/2". DH is 5'5" and I am 5'3", so various doctors just gave us the "constitutionally short" speech whenever we brought it up. At this point, she's made peace with her height. We figure she'll be 4'8"-4'10". I would be shocked if she makes it to 5'. 

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About 17-18 years ago, our neighbor friends went this route with their DS when he was about 12 -- it was 12-18 months of growth hormone and it was so expensive -- like liquid gold. But, it did help, as he was looking to be 5' or just below before treatment, and ended up about 5'-7" or 5'-8". I don't know about any other health issues.

Edited by Lori D.
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My friend pushed for it for her tiny adopted son.  He was making growth hormone, but not much.  His bio dad was maybe around 5'3"/4". They've moved to Florida so I've only seen her a couple times since. He was on track to be closer to average height. 

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Our son was predicted to grow to around 4 feet tall as he almost stopped producing growth hormone. There is a great risk for brittle bone disease when you get into your young adult ages if you produce little or no growth hormone that is fixed with growth hormone therapy. Son is now 5'10, a young adult, with excellent bones. 

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We have friends who did. I think they started the shots around age 8. The shots are done sub-cutaneous, and there are versions that are pen cartridges rather than vial based.

The mom said the hardest part was just dealing with insurance coverage. 
 

My grandmother was 4’10”. As you know, it is difficult to drive and do other things at that height. Even a bump up to 5’1-5’2” is a meaningful bump. 

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I have a nephew who has been.  His mother had to push hard for it.  It took going through several pediatricians and specialists before she could get someone to consider prescribing it.  Nephew is now 17 and is tall (approaching 6 feet) and lanky; he has some other underlying developmental problems and I am not sure how that plays into the growth issue.  He had a sister a couple of years younger than he is and a brother 4 years younger--both of whom were significantly taller and heavier than he was when he started.  I know that the treatment was incredibly expensive.  The father changed jobs and insurance plans--to a high deductible plan mid-treatment and they were astonished at the cost.  

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1 hour ago, prairiewindmomma said:

 

My grandmother was 4’10”. As you know, it is difficult to drive and do other things at that height. 

I'm only 4'10" and have yet to meet a vehicle I've had any trouble driving. But the largest thing I've ever driven regularly is a 35 foot long, 20,000 pound Class A RV. I've yet to try anything larger, so I don't rule out the possibility that I might eventually find something that will be a problem. 😉 

Edited by Pawz4me
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1 minute ago, Pawz4me said:

I'm only 4'10" and have yet to meet a vehicle I've had any trouble driving. But the largest thing I've ever driven regularly is a 35 foot long, 20,000 pound Class A RV. I've yet to try anything larger, so I don't rule out the possibility that I might eventually find something that will be a problem. 😉 

Maybe your trunk height is longer?  Grandma had to sit on a pillow and use a pedal extender. My sister also has to use a pedal extender. It's a PITA for her because she struggles with car rentals without one. Glad that's not a particular problem for you!

 

 

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Just now, prairiewindmomma said:

Maybe your trunk height is longer?  Grandma had to sit on a pillow and use a pedal extender. My sister also has to use a pedal extender. It's a PITA for her because she struggles with car rentals without one. Glad that's not a particular problem for you!

 

 

Possibly? I don't know. Even in our RV or our pickup I don't need to move the seat all the way forward. That's way too close for me in both of them. The only time I ever get bothered is in cars that have deep bucket seats. And I don't think those are very common anymore?

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30 minutes ago, Pawz4me said:

I'm only 4'10" and have yet to meet a vehicle I've had any trouble driving. But the largest thing I've ever driven regularly is a 35 foot long, 20,000 pound Class A RV. I've yet to try anything larger, so I don't rule out the possibility that I might eventually find something that will be a problem. 😉 

May I ask if there's anything that *is* difficult for you at this height?

I think my dds are expected to get to 4'9" and 4'11.

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I’m only familiar with this for a boy cousin around my age. He received growth hormone but no surgery and reached the height of 5’4/5”. That’s a win b/c his mom, my 1st cousin, only reached 4’9” and has since shrunk to 4’8”. Her favorite car was a Mazda Miata that I couldn’t abide at 5’4”.

Edited by Sneezyone
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I have friends whose son was absolutely tiny who did it.  At 12 he looked like he was six.  He's about 5'4" now, which is definitely short but neither of his parents are tall people (and his mom is tiny), and he's not so short that it is a disability.  

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32 minutes ago, Pawz4me said:

Possibly? I don't know. Even in our RV or our pickup I don't need to move the seat all the way forward. That's way too close for me in both of them. The only time I ever get bothered is in cars that have deep bucket seats. And I don't think those are very common anymore?

My husband is 5'7", so definitely not really short, but because of where his heigh is located, he pulls the seats in the car pretty far forward.  I'm the same height as he is, and my legs are fairly short (pant lengths are an issue), but I have to push the seat back when he's been driving.  

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24 minutes ago, Junie said:

May I ask if there's anything that *is* difficult for you at this height?

 

Reaching the top shelves of my kitchen and laundry room cabinets, and reaching some items on higher shelves in the grocery store. At home I keep a folding step stool in the little gap between the fridge and lower cabinets. It gets lots of use. That's about all I can think of right now, although I suppose it's possible I've normalized some adaptations so much that I'm not thinking of them. If I think of anything else I'll post again.

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6 minutes ago, Pawz4me said:

Reaching the top shelves of my kitchen and laundry room cabinets, and reaching some items on higher shelves in the grocery store. At home I keep a folding step stool in the little gap between the fridge and lower cabinets. It gets lots of use. That's about all I can think of right now, although I suppose it's possible I've normalized some adaptations so much that I'm not thinking of them. If I think of anything else I'll post again.

Well, I have trouble with those things at 5'3".  The only person in our house with any height (ds20) is away at college.  I use my step stool more now that he's not here.

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Just now, Junie said:

Well, I have trouble with those things at 5'3".  The only person in our house with any height (ds20) is away at college.  I use my step stool more now that he's not here.

Yes, I was going to add that my DH is 5'11" and he still needs the step stool sometimes. I just need it more often. It's not exactly a life impacting thing.

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I have lots of cousins under 5', including at least one boy. (I come from a big family....I have something close to 35 1st cousins).  No experience with the shots, but a few things they struggled with without a stool:

A big one is reaching the back of kitchen cupboards or pantries (they kept things pulled up in the front) or around the corner in cupboards.  Reaching things at the store is obvious. Getting a baby out of a crib or items out of a chest freezer. Getting small items out of the bottom of a top load washing machine. Doing tasks like cleaning windows or dusting blinds. Getting things off the top of the shelf in closet. Not being able to touch the ground with thier feet on the sofa, padded chair or commode. I especially remember them talking about this one, because it made them feel like a little kid instead of an adult.  Getting things out of a over head attic/garage storage. Driving was a big one for them and being able to see directly behind the car or in front of the hood of the car. (We had a child ran over in our family, so everyone was a bit sensitive to this one). They needed stools to do things like pick apples and grapes, absolute not a big deal unless your the person moving a small ladder around when others are just walking from section to section. Accommodations were easy with a ladder/stool, but they hated having to have a stool, when the rest of us did not. 

The didn't do sports growing up, and said thier height held them back. I don't know if this is true, for all sports.  I know gymnasts and cheerleaders, especially flyers, are often petite. 

My family has thin petite women, they were a double or triple zero for clothes. They often made thier own clothes. Buying professional shoes or coats was hard back then, because they wore children size shoes. While girls size tops/jackets fit thier height, they weren't cut for a woman's breasts and pants didn't have hips for a woman. I think they all passed around the same maternity clothes to avoid having to custom make a wardrobe for each.  It is probably much easier now, but even my friend who is 5'1' laments having to have all her pants hemmed. 

I also remember they complained that people treated them younger than they were. Correlating height with a young age. 

I never realized how much they did talk about it. LOL I was the shortest person in my class at school until high school. Then I grew rapidly to reach 5'8".  I guess I remember my cousins lamenting because even though I was much younger than they were, they often asked me to reach things for them. Stools were easily available at thier own house, but not necessarily at other people's homes. Genes are weird. LOL  My mom and sisters are all right about 5'6" so we didn't have a need for stools at our house. Instead, the cousins had to ask us to get things for them. 

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I know three families whose dc were recommended for this. 

One family tried it, but it turned out their dd had some other genetic issues, and the growth hormone didn't "take."  Their dd is around 4' tall at most.

Two other families chose not to do it, because they didn't see a problem with being short.   One family's dd ended up around 4'11" - around the same height as her mom.  The other family's dd grew to 4'6" - a few inches taller than her mom.  

 

 

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Thank you all so much for sharing your experiences.

My dh and I were just looking at the list of side effects and it's pretty scary. 😞

It's a difficult decision that I've been putting off -- but a decision needs to be made soon.

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My nephew had the overnight test and they determined that he was producing low growth hormone. My niece had the same test and did not come up low on hormones, but the clinic gave them "extra" doses that others did not use.

My nephew is 16 and probably 5'5" or 5'6". He is still getting doses. 

Side effect wise, the jury is still out. My nephew had a growth on his forehead that had to be surgically removed. Was it related? No idea.

My niece is 14 and probably 4'8", however her mom is 4'10.5" and her grandma is 4'9"  so there seems to be a genetic predisposition to short stature. That said, she still has not started her cycle so she should still grow more.  The clinic they were using for endocrinology has closed so she won't get any more "extra" doses. Honestly, I think she will probably end up about the height of her mom. 

With all due respect to any reading this that are short like my SIL, my SIL has expressed that it is not always easy to be that short. They do have to take it into consideration when they buy a vehicle. And when she was younger and teaching in an elementary school, she was mistaken for a student a couple of times.  She is a wizard at hemming pants.  Her little frame had a hard time with childbirth and she ended up with an emergency C-section for my nephew. It's not all rainbows and unicorns.  That said, I am 5'3.5" and I have to climb the grocery shelves just like she does! I need a stool to get to the top shelf in the kitchen. So, there is a wide range of "short" that has implications for day to day things.  I consider myself on the short side.  I survive!  I am the shortest woman in my family (and maybe my niece inherited this as well).  

This is all totally anecdotal. I mean, I think this is such a tough decision. The doctors say that your child will only reach x height if they don't reach y by such and such age.  However, there are exceptions. There are boys especially, that have a large growth spurt late in high school. It does happen.  So all they can do is go off the statistics of what normally happens. With girls, they say that you don't grow much after you start your cycle, and girls now are starting their cycles much earlier than when I was a teenager. So that factors in too.  

praying for your wisdom, OP. This seems so hard to me.

 

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My son took HGH for a time, but because he had other medical complexities my decision making process won't be relevant.  Growing taller wasn't our goal, although he did grow a little taller while he was on it. 

My understanding is that if a child or teenager isn't producing HGH it can cause problems beyond just lack of height. For us the bigger issue was body composition, and building bone and muscle mass. I have no idea how that applies to kids without inflammatory disorders, so while I don't have any opinion about whether I'd do HGH just for height, I think it's important to see the endo and see what's going on hormonally, and what the possible benefits and side effects are for your particular kid.

Good luck!

Edited by BaseballandHockey
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15 hours ago, Pawz4me said:

I'm only 4'10" and have yet to meet a vehicle I've had any trouble driving. But the largest thing I've ever driven regularly is a 35 foot long, 20,000 pound Class A RV. I've yet to try anything larger, so I don't rule out the possibility that I might eventually find something that will be a problem. 😉 

 

This is my height as well, although maybe just shy of 4'11?   I find some stick shift cars are difficult to drive if the reach is too great.

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13 hours ago, Junie said:

Thank you all so much for sharing your experiences.

My dh and I were just looking at the list of side effects and it's pretty scary. 😞

It's a difficult decision that I've been putting off -- but a decision needs to be made soon.

 

I personally wouldn't do it unless it was something drastic.   For example, my friend's daughter had leukemia at age 1.   She had so much chemo that they were told she wouldn't grow much without it.   They were also told she wouldn't be able to bear children.   

She is now 23 and probably 4'9 or so.  

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5 hours ago, cintinative said:

That said, I am 5'3.5" and I have to climb the grocery shelves just like she does! I need a stool to get to the top shelf in the kitchen. So, there is a wide range of "short" that has implications for day to day things.  I consider myself on the short side.

 

You may consider yourself short but you are in fact exactly the average height for a female in the U.S.

See here and here.

 

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Last year about this time I listened to a This American Life story about Human Growth Hormone - it was an interesting listen, there are 3 stories and I feel like it was the last of the three - Small Things Considered.

I am not quite 5'2" and my youngest daughter is just over 5' tall. She is an adult and doesn't seem too small - she looks like a real adult. She had a very best friend in elementary/middle school who was 6 feet tall by about 5th grade and they didn't look strange together. 

She learned how to drive in her dad's full size '99 Chevy Truck! I don't feel like her height holds her back. It was an asset as a cheerleader, but she also played basketball for a few years and was an excellent volleyball player (the libero) playing varsity as a freshman. 

My suburban had adjustable foot pedals which I loved. My current jeep does not, and though it is a smaller vehicle, it is a little tricky for my feet to reach - I have to sit much closer to the wheel than I would prefer. I also drove an adorable convertible Mazda Miata for a couple of years  -that was fun, but my husband at 5'11" drove it, too and he enjoyed it.

As a short person, I don't feel short. I actually feel like I am the same height as anyone! haha!!  But I do jump up on the shelves at the grocery story and climb on the counter at home.  I love when I can talk my son into grocery shopping with me - it seems like an amazing feat to be able to reach items on the top shelf with feet flat on the floor!

 

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23 hours ago, historically accurate said:

My youngest is an itty-bitty. We were never able to convince a doctor to get us to the endo even though she has been considered short stature since she was 2. She has run from below the 1st percentile to the 3rd percentile her entire life. She is 13 and 4'7 1/2". DH is 5'5" and I am 5'3", so various doctors just gave us the "constitutionally short" speech whenever we brought it up. At this point, she's made peace with her height. We figure she'll be 4'8"-4'10". I would be shocked if she makes it to 5'. 

Same here. Dd insisted she get her blood drawn to see if she oils get to the endocrinologist. Her blood work came back fine. Both of her grandmothers were barely 5’.  She’s been below any percentile since she was 3. Oldest was 98th percentile and 10 lbs when he was born. Two completely different outcomes. 
 

The doctor informed her she only has about a year left of growth. She’ll be lucky to hit 5’. We know a petite P.A. who is a rock star and doesn’t let her height slow her down. So at least dd has a role model. I make sure to point out the many petite women we see while out just to reassure her she’s not as abnormal as she feels. 

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1 hour ago, Pawz4me said:

You may consider yourself short but you are in fact exactly the average height for a female in the U.S.

See here and here.

 

That is so interesting!! I wonder what the variation is by geographic area and what genealogical backgrounds/ethnicities are predominant.  

I would never have thought I was average height!  😃

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I'm just under 5"1, and I could see how being under 5" would be an issue. I struggle getting things out of the washing machine, seeing properly in some cars, can't reach the bottom of a deep freeze, etc. 

And for a male it would be worse, as far as finding clothes, etc. 

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I think the most important thing is to talk to your child's endocrinologist. They are the experts. They will be able to help you know what the risks of not doing it are besides lack of height. And they can help you weigh the more likely risks. 

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On 11/17/2020 at 7:03 AM, Junie said:

Thank you all so much for sharing your experiences.

My dh and I were just looking at the list of side effects and it's pretty scary. 😞

It's a difficult decision that I've been putting off -- but a decision needs to be made soon.

You need to also consider the side-effects of insufficient GH... they are scary, too.  

 

My youngest two children are very small, with my ds6 at the 1%ile and my dd8 well below the chart entirely.  

For dd, we have gone through all the hoops of testing for GH deficiency.  Despite her having all the symptoms, her growth hormone stimulation test (the one done over about 6 hours, by IV) did not show a deficiency.  Here in Switzerland, the law is extremely clear- you cannot receive GH if you are not clinically deficient.  So there is no decision for us to make.  Had she been deficient, however, we would have chosen to supplement with GH.  

If you have specific questions about the testing process, you can ask me.  

 

I am 5ft1in, and dh is 5ft7in, so we know that our kids are not going to be giants.  But there is a big difference between my height and even just a few inches shorter.  I wear normal clothes and can get most pants in short length, I wear normal adult size shoes, etc.  The only annoyance at my height is seating.  I always sit with my legs folded under me, because my feet don't comfortably touch the ground in normal chairs, couches, etc.

 

 Interestingly, my oldest son has celiac disease, and testing for celiac (blood test, not endoscopy) was part of the battery of tests we did for short-statured dd.  Her test results were negative.  Recently, for unrelated reasons involving a leg operation dd will have, I asked our pediatrician if we could just do a blood draw and sort of check all the easy things there are to check- thyroid, etc, etc, and he suggested we go ahead and re-run the gluten check just because.  Well, THIS time, her results were very, very, very positive.  So we immediately took her off gluten, and I am crossing my fingers that we see a big growth spurt in the next six months.  

I'm not sure if you'd like to name your dd's genetic condition, but I am curious, if you are willing to share.  

 

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1 hour ago, Monica_in_Switzerland said:

 

I'm not sure if you'd like to name your dd's genetic condition, but I am curious, if you are willing to share.  

 

We have a genetic birth defect called Noonan Syndrome.  The wikipedia page for Noonan Syndrome has a good list of the symptoms.  When I changed neurologists, the neuro was unfamiliar with Noonan Syndrome and wanted to do a quick read while I was in his office.  He kind of rolled his eyes at me when I sent him to the wikipedia page. 😉  I told him that I know wikipedia isn't always the best source, but in this case it has the most comprehensive list of symptoms.  He shrugged and read the wikipedia page. :)

The list of symptoms is long, but nobody gets all of the symptoms.  In our family, our symptoms are fairly minor.

Noonan Syndrome affects 1/1000 to 1/2000.  A lot of times, especially in people my age and older, it has gone undiagnosed.  My symptoms are on the mild side.  I was diagnosed the same day that dd12 was.  I always knew there was something "different" about me, but there wasn't anything major that we could pinpoint -- just a lot of minor things that all added up.

Because I have Noonan Syndrome, I had a 50/50 chance of passing it to my children.  The first four missed it.  If I had only had four children I would have never been diagnosed.  My two girls who have it will also have a 50/50 chance of passing it on.

 

 

 

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DD12 has Turners Syndrome and one of the defining characteristics is short stature. It isn't because she doesn't create GH but because her body doesn't absorb it very well. Turners girls usually lack a gene that helps them absorb it, so we flood their bodies with it hoping they'll absorb a little extra. I'm 5'10 and DH is 6'3" but she was not even on the growth chart when she was little. We found out about her Turners at 6yo and she started GH then. She takes a shot nightly. Every year she gets a hand x-ray to see if she is still growing. Insurance covered it for us for either free or a reasonable monthly co-pay.

I second listening to the endocrinologist. They know their stuff when it comes to this. A good endocrinologist is worth their weight in gold.

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30 minutes ago, Junie said:

We have a genetic birth defect called Noonan Syndrome.  The wikipedia page for Noonan Syndrome has a good list of the symptoms.  When I changed neurologists, the neuro was unfamiliar with Noonan Syndrome and wanted to do a quick read while I was in his office.  He kind of rolled his eyes at me when I sent him to the wikipedia page. 😉  I told him that I know wikipedia isn't always the best source, but in this case it has the most comprehensive list of symptoms.  He shrugged and read the wikipedia page. 🙂

The list of symptoms is long, but nobody gets all of the symptoms.  In our family, our symptoms are fairly minor.

Noonan Syndrome affects 1/1000 to 1/2000.  A lot of times, especially in people my age and older, it has gone undiagnosed.  My symptoms are on the mild side.  I was diagnosed the same day that dd12 was.  I always knew there was something "different" about me, but there wasn't anything major that we could pinpoint -- just a lot of minor things that all added up.

Because I have Noonan Syndrome, I had a 50/50 chance of passing it to my children.  The first four missed it.  If I had only had four children I would have never been diagnosed.  My two girls who have it will also have a 50/50 chance of passing it on.

 

 

 

 

Thank you for sharing!  Both my short kids were also born with bilateral clubfeet, so I'm always on the lookout for rare genetic conditions that might link the two.  It doesn't look like Noonan syndrome is it, though.  

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@Monica_in_Switzerland Oh, that's interesting!  Have they seen a geneticist?

I was really resistant about seeing a geneticist.  Our pediatrician and I went around and around.  "I think she might have a genetic defect." "No, she doesn't.  She's just like me when I was a baby."  It turns out we were both right. :)  After dd12 was diagnosed (at age 1) all of my kids had cardiac echoes to make sure we weren't missing anything.  Dd12 (and dd10) have a minor heart defect, but nothing that requires treatment.

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1 hour ago, Junie said:

@Monica_in_Switzerland Oh, that's interesting!  Have they seen a geneticist?

I was really resistant about seeing a geneticist.  Our pediatrician and I went around and around.  "I think she might have a genetic defect." "No, she doesn't.  She's just like me when I was a baby."  It turns out we were both right. 🙂 After dd12 was diagnosed (at age 1) all of my kids had cardiac echoes to make sure we weren't missing anything.  Dd12 (and dd10) have a minor heart defect, but nothing that requires treatment.

 

We haven't seen a geneticist, but it's a good question.  It's been a while since we were seeing the endo regularly (dd's growth velocity suddenly became normal instead of stagnant, so we have put it on the back burner at this point) but my recollection is that he tested for Turner's and maybe one other condition.  We've also talked quite a bit with her clubfoot specialist who can't seem to link the two conditions together with a syndrome either.  But a geneticist is a good idea.  

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Our zoom appointment went well.

I'm still not sure if we're going to go ahead with the growth hormone, but I am planning the next step of bloodwork and bone age scan (hand x-ray).  Then we will at least know what we're working with.

Thank you all so much for your help!!

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