Child is not tall - anyone know of specialists?

My son does not seem to grow at all, have taken him to the paedritician who keeps reassuring me that everything is okay. Have read reports that some kids have growth deficiency syndrome. Does anyone know of what doctor, specialists etc I can see? I heard that paedritic encrinologists can help to see if the child has a hormonal problem. Need help...please send emails as very worried.

I'm interested in how old your child is and what his statistics are. I imagine your pediatrician knows what he/she is talking about but perhaps you should look at a second opinion for peace of mind. I wouldn't go straight to an endocrinologist just yet but it might be something to consider if you get a further opinion that suggests it's worthwhile.

He is 8 years old and he is 114cm. From his statistics, he grows on average 3-4 cm a year. While I am not a specialist, I compare him to his peers. Kids younger than him say 5-6 are taller than him and I can comments all the time about how short he is. I feel so bad for him because he gets teased an awful lot at school. I am at my wits end as my paedritician has simply told me not to worry (he didn't do anything other than check his height). I really do want a second opinion but who should I get this from?

I can understand your concern but I'm guessing he is in proportion to his weight.

It's worth getting a second opinion if for no other reason then to confirm your child is just fine, it'll certainly make you feel better.


If you are based in Hong Kong there are a number of well regarded pediatricians, just do a search above to get some names.


And don't forget to be positive about your sons appearance, he'll need to feel good about himself if he's having to deal with teasing at school. It might be worth having a chat to his teacher.


Good Luck....

I think it is certainly worth pursuing a second opinion. I have posted here before and my twin sister an has almost six year old who is also very small. Pefectly proportioned but TINY - maybe only 13kg and he is six in one month. After two pedeatricians and six years of asking questions he has finally had a series of bloodtests to check for his growth hormones ..... surprise surprise he has virtually none and will shortly start on two injections of growth hormone a day until he has reached his full height. She had to perservere a lot to get this far, he had initial blood tests that were inconclusive and x-rays that showed that his bone formation was suitable for his age (just small). She then had to have blood taken every hour over a 12 hour period in hospital to get an accurate picture and then the sweet little thing has had to have an MRI of his pituitary gland so they can try and see what is going on... there is still no clear diagnosis. I will get an update from here soon I hope and fingers crossed nothing nasty.

He was born a normal weight of 8 pounds and then stated moving down the growth chart almost immediately. He never eats much (because his body is never hungry) although he likes all kinds of food and is not a picky eater. If not asked to eat he would hardly ever ask for food. He is extremely active (almost hyper in my opinion) very bright gorgeous little boy. Because of this people were always telling her not to worry etc. and everyone had a story of someone who was tiny and then grew to six foot or more as an adult. However she has perserved and he will be starting treatment which should be very effective soon. If you have normal level of growth hormones however, the addition of more will not make much if any difference to your height. If you like I can ask here what the actual tests were called - she is based in Sydney so can't help with doctor recommondations unless she asks her endocrinologist now if he has a colleague or contacts here in HK. May I add that my father and younger sister are both doctors as well as brother in law and none of them have a clue what is going on with him as it is an extremely sepcialised field.

Thank you so much for your emails. I feel somewhat relieved to know that maybe I am not alone in this because honestly, I feel like I'm going against a brick wall. Ness, you've basically written out exactly what I am going through. You've described my son to a tee - he is bright, very popular with his friends, very hyper and gorgeous. And I keep getting the dont you worry, he will grow from well intentioned friends and relatives. But I know something is wrong and I keep telling the paedritician. I don't know if I can put him through the blood test over 12 hours, it sounds terribly painful...I would so really really appreciate if you could let me know what the tests were and to see whether I could do it here. In particular, whether her doctor has any information on encrinologists in HK. I am also from Sydney so if there is someone in Sydney who can help, I could also go to Sydney for tests etc if this need be - although it would be good if there was someone in HK first that I could go to first for the initial tests and diagnosis. I understand its a specialised field and only found out from my search on the internet. My heartfelt thanks in advance for your emails and help on this and any info you can give me.

I will contact my sister and ask for the details for you and then post here in the next day or so. She had to change pediatricians after the first one just kept weighing him etc every six months etc and saying he is fine, then one day at a large family lunch she got a bit defensive about his height etc when my father was questioning her about what she was doing regarding medical investigations (he is a doctor) and she said something about the pediatrician saying he was fine and that he himself was only 5ft 2 and that was when my Dad said "Time to get a new pediatrician". I think the blood tests over the 12 hours weren't too bad as they put in a canula and then they can just draw off a little bit every two hours or so. He couldn't eat after midnight though the day before. I think that she and her husband and indeed the whole family have always been happy to accept that if this was the height size he was going to be and there was nothing to be done then they would make sure he had all advantages and was as happy and balanced about it as possible, but I don't think they could forgive themselves if he missed treatment that could get him to a "normal" size because they were put off by people. He can't get school shoes, or school clothes, or reach anything, he plays soccer and is fantastic at it, but with kids that adore him that could change as kids get older and meaner (as they do).

I will contact my sister and ask for the details for you and then post here in the next day or so. She had to change pediatricians after the first one just kept weighing him etc every six months etc and saying he is fine, then one day at a large family lunch she got a bit defensive about his height etc when my father was questioning her about what she was doing regarding medical investigations (he is a doctor) and she said something about the pediatrician saying he was fine and that he himself was only 5ft 2 and that was when my Dad said "Time to get a new pediatrician". I think the blood tests over the 12 hours weren't too bad as they put in a canula and then they can just draw off a little bit every two hours or so. He couldn't eat after midnight though the day before. I think that she and her husband and indeed the whole family have always been happy to accept that if this was the height size he was going to be and there was nothing to be done then they would make sure he had all advantages and was as happy and balanced about it as possible, but I don't think they could forgive themselves if he missed treatment that could get him to a "normal" size because they were put off by people. He can't get school shoes, or school clothes, or reach anything, he plays soccer and is fantastic at it, but with kids that adore him that could change as kids get older and meaner (as they do).

This website seems to describe what she has followed in terms of testing etc....http://www.hgfound.org/growth.html I think she is also have a work up of food allergies or intolerances at the moment just to cover all the bases as she definitely feels that there is no more time to waste. He is not a fat boy either, a lot of kids with growth hormone deficiency are quite chubby and a little lethargic, he is very slim indeed, his two year old sister and three year old brother are the same size as him.

Hi there, haven't you consider that it could be his genetics. I have 2 daughters, and physically they quite the opposites. They take after each parents.

Intrested Party - here is the reply from my sister, who has an almost six year old just about to start treatment (next week I thihk). I am sure she would not mind getting in contact with you if you want and if fact she is bringing the kids for the october hols to stay with u here in HK. I asked here about Sam's doctor and the testing/treatment for you.


Ness,


I will bring with me a very good booklet from Eli Lilly who are the company that make Sam's growth hormone. The drug he takes is humatrope. At 114cm tall this boy is definately small for his age. 100cms is an average 2 year old. That is what Sam is at 5 years old. If you put humatrope in the web and look at Eli Lilly pages you should find some helpful information. Ignore the web sites for American adults who take it because they believe it has anti aging properties. Sam sees a Dr. called Christopher Poon, he is a paedeatric endocronolgist attached to Westmead Childrens' hospital. He is Singaporean born and trained and about 50 years old. None of my GPs or normal peadeatrician where keen to do anything about Sam's height , I asked for the referral from the medical centre. (Insisted on it)


I don't think the Dr's take the small thing seriously. Lots of reasons why kids don't grow, which is why I will bring the booklet for her. The test all take about a year to complete and the treatment with HGH is expensive, Sam's will cost retail about $30K aussie per year when he is on a full dose. American families often have to fund it themselves which can be difficult. Some medical insurance companies cover it though. Sam's is funded by medicare. His regime is one injection every day, must never miss it. If he does he might not grow and if he doesn't grow they stop the treatment. He will have 3 monthly dr's appt. and the drug is supplied in 3 month lots. Couriered from the company to the Dr where I will have to go and pick it up. It must always be refrigerated. even when travelling which is about the only down side. The injection is like a diabetic pen and doesn't hurt at all. The hormone is synthetically made so no risk of CJD (mad cow disease).


For the tests:


They start with a xray of the left hand and some blood tests to test for iron, ceoliac's disease and growth hormones. But the real test for growth hormones is a full day in hospital because they need to take the measurements over a full day and in stressful conditions. You mainly make them when you exercise, are stressed and are sleeping. That is why lack of sleep for any reason can retard growth. They also look for malabsorbtion of nutrients, heart defects, unrinary tract infections which can all be hard to diagnose but over time can stop you from growing. Taking growth hormones will help you grow somewhat even if you are just constitutionally small (no reason at all for lack of height.) In 2003 the American FDA approved hormones for the bottom 2 % of kids even where no medical problem was found and those children grew 2 - 4 inches extra over 7 years than the ones on the placebo. Eli Lilly have all their trials on the web site and the FDA approving it was a big deal.


The Xray shows your bone age, if your bone age is younger than your real age it can indicate that you will grow in puberty (maybe a late puberty though).


Sams MRI showed a small pituatary gland nothing sinister. They have to check that your pituatary gland doesn't have tumours as growth hormone can affect that.


Sam will be on growth hormones for the rest of his life. The exit age for growing is when your bone age reaches 15.5 years or when you are 10% taller than the average male. However research shows that people with his problem feel better if they always take the hormones. If you still have your 'blue books' for the kids the growth charts in there are still applicable or you can check on the web under failure to thrive which will bring up lots of the American charts. There are also some websites which will do the growth velocity which predicts adult height. (put in your date of birth, height and weight now and it will tell you what your predicted adult height will be). Sam was predicted to be less than 4ft.


One thing she should do even if the Dr's are not being sympathetic is start measuring him accurately every month or few months. This record is important because it can show that there has never been any growth spurts. Probably the best way is to visit the GP so it is on record and they can also do weight and head circumfrence. Also to qualify for the drug here you have to have one year of accurate measures from your Dr. to be considered. If you have growth spurts you probably have hormones. Sam has never had a growth spurt. However as I said the hormone will help nearly anyone who is going to be below average height achieve a few more inches. Which can be a big deal - especially for a male.


There are some intersting dialogues you find on the web. There are a lot of people who believe that we come in all different shapes and sizes and that you don't need to help small kids to be taller, but we all now that there are social and phsycological problems with being little from being treated below your choronological age, not being able to get clothes like your mates, being bullied, finding girlfriends and competing in your age group at sports, which is why the FDA decided to approve it for use in kids that had no apparent medical reason for being small. So he should have all the tests because even if he is just constituionally small the drugs may help. At the end of the day it is a personal choice - alhough you have to consider the opinion of the child - who may look at you in years to come and ask why you never helped them.


My booklet points out how important it is to treat small kids appropriate to their age. It is disheartening as a parent when every one is commenting on how 'cute' your child is. Or he is being made role play the baby at school... or in our case his girlfriend was carrying him around!

Hope this helps.

Interested Party, you are not alone!! My daughter is going to turn 5 in mid Oct. She's the size of a two or three years old. While she's on the thin side, she is well propotioned. Development wise she's great. I read your description and found it very similar to my kid's. She's very bright, very energetic. She has very little focus on food and always fight to sleep. When she was younger I was so worried, but her doc then in states always told us not too worry. Two years ago when we arrived in HK her new pediatrian here, Dr. trodd think we should see a specialist and he send us to Dr. low. Dr. Low is known as Prof. Low, he is with HK university and has a private clinic in Queen Mary Hospital. From what I gather, he is the guru in the paedeatric endocronolgy field here in HK. When went to see him about a year ago and did all the test the above posting mentioned.

Dr. Low is very kind and very patient every time we meet him. If you are going to see someone in HK, I highly recommend to see him.

However, all my daughter's test come back NORMAL. She has no low growth hormone problem, her bone age is normal, and some other test shows normal too.(Sorry I can't remember some of the technical terms, it's been a while.) They think my daughter's case is "constitutional delay". She may have a growth spur later, but even with that, she's still going to be short, I was told.

Anyway, I hope this help. I know what you going thru because I am on the same boat. If you have further question, you can email me.

Good luck

Dear Ness and Iwonder

Thanks for the detailed information. I am glad it looks like I am not alone in this. I feel heaps better now. Thanks for all the support. I have been away for a few days and therefore was unable to get on-line earlier so SORRY to reply only now. It looks like I will definitely check this out with an endocrinologists. I did a check of his growth chart to see if there were growth spurts (I wasn't sure what this meant but I guess Ness's sister meant whether there were sudden spurts where he grew up a lot all of a sudden) and this has not occurred – there was one year where he got onto a higher curve at one stage – not sure if that qualifies but otherwise he has not. Thank you thank you for the information on the specialists from HK and Aust. I will definitely go to see Dr Low in HK for a first diagnosis. I am ever so grateful for the information you both gave me as I probably would have still been seeing my paedritician a year later and he will still be telling me that everything is fine. The tests still do look quite intimidating and its so hard to put him through this. How did you cope especially when the child has to be in hospital for a whole day for the blood tests? I am scared thinking about it but at least you know at the end of the day whether there is a problem and if there is one, you can do something about it. I am now at that stage where I am a little hesitant about putting him through the tests – any thoughts on this?

I still remember the day we went to Queens Mary hospital for the blood test. I wasn't too worry, simply because the procedure sounded very straight forward and we didn't think too much about it. (Our whole family is usually very healthy so rarely had the need to go to hospital.) We followed the instruction, not to give her any food the night before. Our appointment was 9am, but the technician didn't start working on her until 10am. The procedure also turned out more complicated than I had thought. My daughter didn't take the test well and the long waiting made things worst. She cried and cried. I remember at one point I cried too, and had to get my husband from work. We didn't leave the hospital until noon. By the time we get the closest restaurant, My daughter already exhausted herself to sleep. It was such a emotional day.

But now, two years later, looking back, I think it's worthwhile. I won't say we glad that we did it, because her test result was normal. But it was something had to be done. If we never had done it, we will never get to the bottom of the problem.


Hope this help.

My sister sent her husband for the day in hospital with her son - they have a very good relationship as he works from home a lot. would suggest lots of books, some little presents and games and moral support from hubby or a good friend, although her little boy took the tests quite well. Good luck. If you want me to forward you on the literature that she is going to bring up in October leave me an address by private mail. cheers

Ness/Iwonder - Just to let you both know I have made an appointment with Dr Low. He has been on leave for a month and is fully booked till November! His rates are high as he probably is very well known, for your information, he charges HK$1,500 for first consultation with bone xray an additional HK$850. My private email is joan_chan@lycos.com and I look forward to hearing from you both. My heartfelt thanks again for the support and information received from you both and hope to hear from you both.

Hi,


Just an update from my sister and two websites she found that she thought were useful. Her boy has been on the Growth Hormone for a month now and his first check up finds that he has put on half a kilo and grown 1.4 cm.


We have had a computer crash so I do not have your address etc any more - thus am posting here.


http://www.emedicine.com/ped/topic1810.htm

http://kidshealth.org/parent/medical/endocrine/growth_disorder.html