Dwarfism - Xpost

[BlsdMama]

Would we know?

 

I'm curious. All of our kids have been fairly small, with the exception of our Squishy.

 

But Sarah is exceptionally, shockingly, unbelievabley little. I thought the pediatrician looked worried about Ella, lol. Until I told her Sarah was going to be three in May. Then she looked downright alarmed.

 

I swear we feed her. As a matter of fact we feed her a rather lot. And good stuff too!

 

She can wear 12-18 month clothing, both in size and in length. Her 2T stuff swims on her for the most part. She's just over 20lbs. now and very, very short. Developmentally she is WAY ahead of her peers and two of her sibs who are 4 & just turned 6. She can sing her ABCs, count, run, jump, play, and do it all. She's just miniature.

 

We had adrenals tested a year ago. Normal. But it is really as though she has stopped growing. Just tiny. And to be fair, she is extra cute.

 

(Both Daniella & Sarah are beneath the 2nd percentile. But Ella is in the 25% for height.)

[Mrs Mungo]

There are other signs of dwarfism.

 

My son is NINE and weighs 42 lbs. He eats more than I do. He has had *all sorts* of tests through endocrinology, gastroenterology, genetics, etc. Everything indicates that he is normal in very way except for his size (and he has a lung problem, but the doctors believe it is unrelated to his size).

[Audrey]

I think you should have her see a developmental pediatric specialist. It won't change who Sarah is, but it will probably give you the answers you need.

 

FWIW, I stopped growing at age 3 and did not grow more than another 1/4 inch until I was 7 1/2 years old. A specialist told my parents I would probably never reach 5 feet tall. My projected height was something like 4' 9".

 

The last time I was at the doctor's for a full physical, my height was measured at 6' 1/4".

 

Just some things to think about:

When my growth spurt did come it was incredibly painful. My mom let me stay home from school and cry through it. I think, sometimes, that this hurt her almost as much as me.

 

People treated me like I was a tiny 3 year old when I was a "big girl" 7 year old. People always wanted to pick me up, like I was a doll or something. I really, really, really, really resented that very, very, very, very much. I cannot express that emphatically enough. Maybe your girl will not mind, but if she ever expresses displeasure at it, please back her up on that. My mom was a great interceptor for me when people would go to pick me up. She could have been a ninja.

 

Clothes are tough when you're tiny. Fluffy lambies are cute when you're a 2 year old -- not so much when you're 6 or 7 or older.

 

People are people, no matter how small. (Which is from my most favourite book in the world back then. It made me feel not so alone.)

[Mrs Mungo]

fwiw, my eldest went through a very painful growth spurt like Audrey describes. There was a 2 month period where we bought her shoes 4 times. She was in the second percentile until she hit it. I'm only 5'2" on a good day, dh is 5'6"; eldest is taller than either of us.

 

My middle has yet to hit such a growth spurt, she is still quite small.

 

I also agree with Audrey about the problems it can cause.

Edited January 15, 2011 by Mrs Mungo

[sassenach]

My mom grew like this. She was extremely small until she turned around 9. She ended up being 5'11".

 

I think you should have her see a developmental pediatric specialist. It won't change who Sarah is, but it will probably give you the answers you need.

 

FWIW, I stopped growing at age 3 and did not grow more than another 1/4 inch until I was 7 1/2 years old. A specialist told my parents I would probably never reach 5 feet tall. My projected height was something like 4' 9".

 

The last time I was at the doctor's for a full physical, my height was measured at 6' 1/4".

 

Just some things to think about:

When my growth spurt did come it was incredibly painful. My mom let me stay home from school and cry through it. I think, sometimes, that this hurt her almost as much as me.

 

People treated me like I was a tiny 3 year old when I was a "big girl" 7 year old. People always wanted to pick me up, like I was a doll or something. I really, really, really, really resented that very, very, very, very much. I cannot express that emphatically enough. Maybe your girl will not mind, but if she ever expresses displeasure at it, please back her up on that. My mom was a great interceptor for me when people would go to pick me up. She could have been a ninja.

 

Clothes are tough when you're tiny. Fluffy lambies are cute when you're a 2 year old -- not so much when you're 6 or 7 or older.

 

People are people, no matter how small. (Which is from my most favourite book in the world back then. It made me feel not so alone.)

[dangermom]

There are other signs; usually I think the legs will be noticeably short in proportion to the rest of the body. I would join in with the recommendation to see a specialist about it.

[snipsnsnailsx5]

There are ways to test for Dwarfism that are usually apparent at birth I believe...although there are several types of dwarfism with some being more rare then the others.

I saw a family who had adopted two children with dwarfism, one of them had the most common type and the other had a type that was very rare - she was perfectly proportioned but was just miniature.

Usually with the most common type of dwarfism, it isn't just about size/height, but there are disproportions with the ration of the leg bones to the arm bones, or something like that.

 

Did your Dr. seem alarmed enough to want to do more testing?

She could just be petite. :)

[Paige]

Is she growing, consistently? My youngest was 21.4lbs at her 3yr well check in August. I think she was 36 or 37in but I'm not sure on it. She's still well below 40in. She had gained 3lbs since her 2yr well check, and she gained 4lbs between 1yr and 2yr. Her doctor was not worried about her at all because she was growing and she was growing steadily. In fact, her pediatrician said that she had grown very well! If your DD has stalled however, and went from 2-3 without growing noticeably, especially in height, then that would be a big red flag. I saw you say it is as if she has stopped growing, but you also mentioned she was tested a year ago- was that because of her size? The normal rate for growth declines from 2-3 so even 1-2in is considered good. My DD grew 2in between ages 2 and 3 and the Dr was very impressed with that. My friend's DD did not grow in height or weight between ages 3 and 7 and that had them looking into dwarfism and other possible causes. It turned out to be a growth hormone deficiency. My other girls were small too but my youngest is much smaller.

[Tabrett]

My youngest ds is 3 1/2 years old and only weight around 22 pounds.

He is very small and short, but proportioned properly. He looks 3, just miniature. He is also very bright. I am not worried about his height since he is proportioned correctly, has good small and large motor skills and is bright. I have one brother who is 5'4". I suspect my ds will be around that height. I have lot of family members on my mom and dad's side that are really tiny. My mom is 5'. My dad's sister is 4' 11". My dh is only 5'7". All my dc are small.

 

3 of my dh's brother kids are the same size as mine. BIL is 5'6" and wife is 5'1".

 

Short people have short kids!

 

We're just short people.:D

[BlsdMama]

 

Did your Dr. seem alarmed enough to want to do more testing?

She could just be petite. :)

 

Thank you so much for the input. Frankly, I haven't been alarmed by it - just aware. And we were at the appointment for baby Daniella. She asked me if I was concerned about Daniella's size and I said, "No. Our girls tend to be very small." Briana and Elizabeth were both diagnosed Failure to Thrive simply based on their size but as the pediatrician got to know our family and our girls, she stopped bothering with the label. ;) With Sarah, she just said, well she's itsy bitsy but she looks good. And if she wasn't worried, I wasn't worried. Then time passed a little and Sarah has a little bit of a problem with blood sugar so we asked her to run a few tests and they came back normal so we left well enough alone.

 

Now we've moved. That means a NEW pediatrician who isn't familiar with our NOW normal, though still petite & fairly thin, girls.

 

I explained that my MIL is 4'11. My sister is 5'2" and my sister in law is 5'1" and didn't hit 100 lbs 'til she was almost 25. Yes, DH and I are normal height/normal stature, but some of the girls in our extended families are really small. And some are really large. But, my three nieces on DH's side were generally in the 25th percentile.

 

Yes, she seemed alarmed. So much so that even though it was Daniella's appt. the conversation came to be all about Sarah and how soon we could get her records transferred here so she could go over them. She wants to see her in a week and a half because she should have records by then to examine her growth curve and decide what to say/do. Some of our kids do have food issues and Ella had some metabolic issues so she has ME wondering if there is some basic underlying theme here that we just have never "gotten" kwim? She kind of freaked me out. :glare: Ugh.

 

I'll bet it's nothing. Absolutely nothing.

 

Thank you for the advice. I'll keep it in mind. We get a lot of comments on how tiny she is and have been asked if she's healthy, if there's any reason why she is so little, etc. But we've never truly WORRIED about it until her reaction. We were just used to OUR pediatrician who is very calm and laid back and doesn't worry 'til there is certainly a reason to worry. Heck, even then she has an attitude of, "Let's be calm and just do what needs to be done..." I miss her. I miss her so much.

[Mrs Mungo]

Short people have short kids!

 

When we saw the geneticist this was his sum-up. I think he was frustrated with other doctors sending him genetically small kids.

[Starr]

If need be you can always look for another pediatrician. Hopefully once she sees the records she'll relax.

[Storm Bay]

Would we know?

 

I'm curious. All of our kids have been fairly small, with the exception of our Squishy.

 

But Sarah is exceptionally, shockingly, unbelievabley little. I thought the pediatrician looked worried about Ella, lol. Until I told her Sarah was going to be three in May. Then she looked downright alarmed.

 

 

An old friend of mine (since high school) had a dd like this. She is nearly 30 now (the dd) and is 4 ft 8 in. She does not have dwarfism. My friend is about 5 ft 2 in and her dh is 6 ft, but there are short people in the family, and this girl is the shortest. She was very tiny and got sick and tired of others trying to pick her up, etc, but she made it through.

 

It's true that short people usually have short dc, just as one of my adopted db's does. He had all kinds of tests done, but was normal. In his case, he grew late and is 5 ft 8.5 in, so they didn't worry when one of his dd's was below the growth curve (as he was).

IFWIW, I stopped growing at age 3 and did not grow more than another 1/4 inch until I was 7 1/2 years old. A specialist told my parents I would probably never reach 5 feet tall. My projected height was something like 4' 9".

 

The last time I was at the doctor's for a full physical, my height was measured at 6' 1/4".

 

 

You have the most amazing growth story I've heard. The one I know is a fellow who graduated from high school at 5 ft 2 in and by 20 was 6 feet.

[newlifemom]

Thank you so much for the input. Frankly, I haven't been alarmed by it - just aware. And we were at the appointment for baby Daniella. She asked me if I was concerned about Daniella's size and I said, "No. Our girls tend to be very small." Briana and Elizabeth were both diagnosed Failure to Thrive simply based on their size but as the pediatrician got to know our family and our girls, she stopped bothering with the label. ;) With Sarah, she just said, well she's itsy bitsy but she looks good. And if she wasn't worried, I wasn't worried. Then time passed a little and Sarah has a little bit of a problem with blood sugar so we asked her to run a few tests and they came back normal so we left well enough alone.

 

Now we've moved. That means a NEW pediatrician who isn't familiar with our NOW normal, though still petite & fairly thin, girls.

 

I explained that my MIL is 4'11. My sister is 5'2" and my sister in law is 5'1" and didn't hit 100 lbs 'til she was almost 25. Yes, DH and I are normal height/normal stature, but some of the girls in our extended families are really small. And some are really large. But, my three nieces on DH's side were generally in the 25th percentile.

 

Yes, she seemed alarmed. So much so that even though it was Daniella's appt. the conversation came to be all about Sarah and how soon we could get her records transferred here so she could go over them. She wants to see her in a week and a half because she should have records by then to examine her growth curve and decide what to say/do. Some of our kids do have food issues and Ella had some metabolic issues so she has ME wondering if there is some basic underlying theme here that we just have never "gotten" kwim? She kind of freaked me out. :glare: Ugh.

 

I'll bet it's nothing. Absolutely nothing.

 

Thank you for the advice. I'll keep it in mind. We get a lot of comments on how tiny she is and have been asked if she's healthy, if there's any reason why she is so little, etc. But we've never truly WORRIED about it until her reaction. We were just used to OUR pediatrician who is very calm and laid back and doesn't worry 'til there is certainly a reason to worry. Heck, even then she has an attitude of, "Let's be calm and just do what needs to be done..." I miss her. I miss her so much.

 

 

Tell me about it. I had to reassure my ped that dd was fine. My dh is Chinese. All my dc have the petite bone structure that usually comes with Asians. I had to go over her diet in detail. Then she put them on supplements b/c broccoli, spinach, cheese, and yogurt weren't enough to offset the fact that I only let them have one glass of milk a day. :confused:

[JoyfulMama]

... We were just used to OUR pediatrician who is very calm and laid back and doesn't worry 'til there is certainly a reason to worry. Heck, even then she has an attitude of, "Let's be calm and just do what needs to be done..." I miss her. I miss her so much.

 

We left our beloved doc 3 years ago, and I still miss her terribly! I completely understand! :grouphug:

 

My dd5 (days ago) wears between a 3t and a 4t. If they had a 3 1/2 T that would be perfect! Instead I hem up the 4T pants and sleeves.

If she hadn't fallen off her growth curve before she was a year old we wouldn't have really done much, however she did fall, and we saw a round of endocrinology, gastroenterology and genetics. Her working diagnosis: Proportionate Growth Delay. Yup, she's tiny, but she's beautiful and perfect in every other way. :D

My dd did fall off her growth curve, and that sounds different from what you have experienced.

If there is a family history (with siblings, it would be significant) of this slower growth pattern, that should be weighed considerably before doing further testing.

 

One thing that really helped us in transitioning to a new doc was a letter that our doc wrote for us to go along with the medical records. This doc was there for the birth of two of my children, got to know us very well, and was doc for all except my dh. I know that this personal touch has helped us with the questions related to dd's size when starting to work with a new doc.

 

Also, if you are really thrown for a loop with this new doc, ask if they would be willing to make a phonecall to, or be available to receive a phonecall from, your previous doc. This simple act was able to get one doc to significantly back down, who was freaking out from thinking he "knew" what was going on. :glare: Having a professional doc question his recommendation was a whole lot more reputable than us, the parents. We never know anything. :lol:

[Amy in KS]

My second child was like this. He was completely off the growth chart at 2-4. However, we did find things. It can be things other than adrenal problems.

 

My son has an primary immune deficiency. It is a highly genetic problem. We found this out when the docs were testing for celiac. If a child has no IGA immune antibodies (mucous based antibodies), the celiac test isn't accurate. I knew he caught everything and had febrile seizures, but so did I as a child. He probably inherited it from me. We were sent to an immunologist. We started being more cautious about keeping him from getting sick (emphasizing handwashing, hand sanitizer, no drinking faucets, very limited activities during flu season). Maybe it's coincidence, but I think working at keeping him healthy has helped him grow better.

 

Of course, he also had very low growth factor (IGF-1), but the doc suggested a wait and see approach because the growth shots have their own problems.

 

At six, he's now in the 20th percentile for height. :)

[BlsdMama]

 

My son has an primary immune deficiency. It is a highly genetic problem. We found this out when the docs were testing for celiac. If a child has no IGA immune antibodies (mucous based antibodies), the celiac test isn't accurate. I knew he caught everything and had febrile seizures, but so did I as a child. He probably inherited it from me.

 

 

Isn't it funny how much comes back to food? Actually we had a child be diagnosed with celiac, and later a second opinion decided not.

 

This last month we had a (different) child test positive with intolerances to egg white, egg yolk, nuts, and wheat.

 

So, yes, we're looking into this with Sarah.

 

We think she's perfect, and yes, extra adorable her size. The only issue that does cause a little concern is that she "bloats" after meals - much like a starved child from a third world country would. We've read about this as a sign of malnutrition. But, then again, it could just be a teeny tiny tummy filled with food. Because this child can E-A-T. ;)

 

She has no signs of food intolerance - perfect skin, shiny hair, NO irritability. She is happy little squirt almost all the time. But we are going to do IgE and IgG tests for her as well.

 

Thank you everyone for the input!

[Aggie]

There's nothing wrong with being small, but it can be a sign of something not being right.

 

Small stature can be a sign of Turners, for example.

 

A friend's dd was not dx until she was 13. None of her doctors were concerned with her growth rate until then. :(

 

I'd have her checked out, just in case.

[elfgivas]

:grouphug: you're a good mom. she sounds lovely. as i read all the responses, i was thinking how hard it is to move and change doctors.... and how a second set of eyes can sometimes find things that the rest of us have just become accustomed to. it might be nothing; it might be something. at least you'll know a bit more than you do now.

 

at the next meeting with your doctor, i'd be really upfront about how startled you were by her concern, about the reading you've done since, about how you want what's best for your daughter, but also want to avoid trauma from unnecessary medical tests, and ask about checking the simple to test things first... she doesn't know you just the way you don't know her, and she will feel better knowing that you are genuinely concerned for your daughter (you know that, but in her practice she will see plenty of parents who aren't, believe it or not, so the reassurance will help her). i loved the suggestion about letting her know your former pediatrician would like to consult with her on it, so that the flow of care is continuous. that sends a clear "we are concerned and completely open and want to help our daughter any way we can" message. :grouphug:

 

hth,

ann

 

ps. if, on the other hand, you don't like her at all after the second consult, i would find someone else. i'd also start asking around the grapevine about her and see what comes back. she may just be a really thorough doctor.... or she may be a "i know best; all parents are idiots" sort of doctor (of whom there are blessedly few, but they are out there)

Edited January 18, 2011 by elfgivas@yahoo.com

[Storm Bay]

So, yes, we're looking into this with Sarah.

 

We think she's perfect, and yes, extra adorable her size. The only issue that does cause a little concern is that she "bloats" after meals - much like a starved child from a third world country would. We've read about this as a sign of malnutrition. But, then again, it could just be a teeny tiny tummy filled with food. Because this child can E-A-T. ;)

 

She has no signs of food intolerance - perfect skin, shiny hair, NO irritability. She is happy little squirt almost all the time. But we are going to do IgE and IgG tests for her as well.

 

Thank you everyone for the input!

This is a good idea, because not all food intolerance has the signs you listed, and malabsorption can also be caused by it. Bloat can be from a full tummy, or it can be from foods that are difficult to digest. I get this from certain foods my body has difficulty with, but then it could just be gas from normal digestion, too.

 

She is tiny, so they won't be able to do a lot of IgG testing at once due to the amount of blood they need to draw, so you may end up needing to do that one more than once. I had two big panels done, and had reactions to foods in each of them.

 

Of course, things may come back normal. There is a third type of reaction to food at the cellular level, but there are no good tests for those, so I wouldn't worry about those unless it becomes obvious that there is a reaction to foods.

 

b