Delayed Development

My 14 yr old son was born at 27 weeks. We have been going to an endrocrinologist for about 1-2 years. Feel lucky that your doctor caught it early enough before he reached his teens. I had no idea that anything like that even existed. My son went through some testings through the endocrine and, for him, they decided to give him testostorine shots 1x a month. I don't have any regrets for taking him to the endocrine. If you have any more questions or want to chat more about this you can email me at ____@____.com..

S.

My oldest son is about to turn 20 and is 5'4". Doctors have said that his height should have been 5'9" based upon heredity and other parameters. Beginning at age 5, I became concerned about his height and a couple of other symptoms that were potentially mild endocrine abnormalities. Several doctors (including his grandfather who's a physician) all blew off my concerns.

Well, when he was 15 they started paying attention. By then, it was too late for much increased growth. His growth plates were 99% fused.

He was first wrongly diagnosed with Congenital Adrenal Hyperplasia by an endocrinologist at Cook's. Then, I took him to one of the top specialists in the country in NYC, and that diagnosis was refuted, fortunately. He could have taken human growth hormone at that point, but it would have had some very unpleasant side effects for a boy that age, and would have potentially added 1/2-one more inch. We let him make the decision, and he decided against it. He would have taken it if he could have started earlier and grown more.

I have a couple of things to add to other responses:

(1) Get more than one doctor's opinion. Even with clinical testing, as in my son's case, the doctor can be misinterpreting the results.

(2) Go straight to the best doctor you can find, even if you have to wait a few months to get in. Try to use a pediatric endocrinologist.

(3) Expect to wait a loooonnnnggg time to get in to ANY endocrinologist. I have seen one for blood sugar and other testing. It takes a long time to get an appointment.

(4) There is an adult endocrinologist that I strongly do NOT recommend. I'll give you his name privately, if you wish. He jumped to all sorts of conclusions about my physical condition and symptoms without bothering to ask me about them! This has happened twice, fifteen years apart.

(5) The pediatric endocrinologist at Cook's came highly recommended by a family who got great results for their daughter from her. Again, I'll give you her name privately. However, get a second opinion, because she diagnosed a condition in my son that would have affected his entire life. For one thing, males with that disorder usually can't have children. This would have affected his future marriage, and he might have never known that it wasn't true.

(6) Above all, go with your gut and don't stop investigating things for your son just because a doctor (or two or three or four doctors) blow off your concerns.

I wish you and your son the best.

I have been living this same story since 2006. So far so good but rather than type it all I just copied from my blog in 2007 after my sons 3rd apt. with the endochrinologist (sp?)....

Well here is the update on Christopher and the endocrinology appointment. We went to see Dr. Thornton today and I must admit I was disappointed. Over the last 6 months everyone had made comments about how big Chriser has gotten and that he seems taller to them, and I bought right into it. Today we were told in a 6 month period he hasn’t even grown a full cm. L The doctor said he was not expecting a real growth spurt but was really hoping for more than a fraction of a cm. He has decided to have us come back in late August (yet another 6 mo.) have another bone age test, more blood work

For those of you who are behind:

A year and a half ago Dr. Chiarello started asking questions about Chriser’s height. At the time I sort of blew him off and told him both Shane and I were short. Approximately 6 mo. After the fact Chriser started having issues with his height (being smaller than most of his friends, not understanding how he was 2 years older than his cousin, Lily, but yet shorter than her, and his friends in YMCA were carrying him around like a doll, he was to short to ride on the water slide at the Arlington public pool which dumped out into 6 in. of water, etc.) When it started to bother Christopher it started to bother me.

We went back to Dr. Chiarello and started to ask questions, Dr. Chiarello predicted that as per my height 5’2 and Shane’s at 5’4 Christopher should reach 5’3 as an adult. Not very tall, not even average for a man. Even though Dr. Chiarello was now not sold on there being a problem he sent us for a Bone age test and some blood work. 3 weeks later I got a call saying he is small for his age but just needed more time to grow. I asked to talk to the doctor and wanted to know how much time, would we just be watching him for growth or what was the game plan. The doctor called back and would not really give me any answers to my questions. I was frustrated and talked to my mom (the family doctor – J) she felt we needed a 2nd opinion. I called Cooks Children’s and got the 1st available (3 mo. Later) and was told I would need to bring the bone age x-rays, and blood work results. When I went to pick up the bone age x-rays I opened them up just to look at the x-ray and out came the radiologist report which said my 6 year old had the bones of a 3 ½ year old. Now I was mad- why didn’t Dr. Chiarello tell me these details- why had he hidden information from me that would allow me to make an informed decision about my child’s medical treatment.

Three months later we saw the endocrinologist who commented on Dr. Chiarello’s poor record keeping of Christopher’s height over the 6 ½ years. There were no dates on any of the measurements so Dr. Thornton had no idea how much he had grown in what amount of time or at what age. Therefore he wanted to wait another 6 mo. to see for himself how much Christopher would grow. Needless to say we now have a new pediatrician. This brings us to today’s apt. with Dr. Thornton.

Due to the lack of growth he wants to watch Christopher for another 6 mo. and at that time if there is still too little growth he will admit him for the 2nd round of testing. He says the second round is invasive and expensive. I know no more details than that. I will check with Betty Waters to see what she says about the 2nd round of tests.

For a while I began to think I was crazy – that I was just making it up – that Christopher was just a little short – that there couldn’t really be a problem and I hope that is what it is but in the same breath I hope he is not picked on like his father was because of his height. I don’t want some kid to pick a fight with him just because he is small and can take him. So for another 6 mo. we are waiting, wondering and praying for the best possible outcome for Christopher.

Now it is 2009 and we have more bone ages tests and more blood work to be done in a few months. My saon now 9 yrs. has been growing in height now but as of Sept. 2008 his bones were still extremly retarded. He is 9 almost 10 and his bones are more of a 5 1/2 to 6 year old. Dr. Thorton has been great (@ Cook's). We have waited a long time and not really moved forward fast because we have time. However the last appt. Dr. Thorton was not as optimistic as before. At any rate I have been pleased because if there is nothing wrong and my son is just small I would rather not subject him to any kind of tratment, but if something is wrong then I have had some of the best doctors watching him for so all this time and really thinking about the best way to treat him and not just jumoing in to the unknown. There is another boy in congrgation at church who did undergo growth hormone and is now close to 6 ft. tall and he looks wounderful. however the doctors did not catch his issue till he was 16.

Hi J.,
Some children will have issues with growth due to the nutrition intake they may or may not be getting. I was a preemie at 7 months and weighed 3 1/2 lbs the doctors did not expect me to live. I am way older now and am very healthy. Anyway you may have to supplement to get the nutrients in so I recommend trying nutritional supplements that are food based, whole and natural. Visit the following link; it may be able to help:

http://www.shaklee.net/choice-wellness/prodNutChild

Hi J.,
Let me tell you...I have been where you are. My oldest son Daniel, was born early also and he has always been small for his age. At his 10 year check up (he just turned 13 yesterday!!) his pedi told us that he was the average size of a SEVEN year old. This crushed my son's spirit greatly. An x-ray was also done that that time. Our pedi suggested that we wait one year to see if he hit a growth spurt...since puberty was right around the corner. We decided to wait on the endocronologist (spelling??) and wait it out. Thank God we waited. Six months after that check up appointment, we went back to the pedi for another x-ray. The 'growth plates' showed significant changes...whatever that meant, it made our pedi really happy. Looking at the x-rays the pedi looked at me and said "mom, don't buy this young man any jeans anytime soon, he'll outgrown them in a month." He was speaking the truth...over the next 18 months, up until his 12 year old check up, Daniel grew SEVEN inches! He is now 13 and he is still 'low' on the growth chart but HE'S ON THE CHART!! He is five feet tall and has put on significant weight. And he is continuing to grow now that puberty is in full swing. He blends in with the other 7th graders...he's smaller, yes, but he looks like a middle schooler and not a fourth grader. So, anyway, I just wanted to share my experiance with you...maybe it will encourage you a bit. I will be praying for you and your family. God bless.
D.