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Hello. I am new to this board. After struggling with my son's failure to thrive for almost 2 years now I have decided to start joining some internet forums to get ideas and support. We are desparate to find a cause for the failure to thrive and hope that someone out there has an answer for us. Here is my son's history:
Tyler was born full-term at 7lb10oz (about 50% for weight and height). He was soley breastfed till he was 6 months old and he thrived (moved up to ~70% for weight). Then he started eating solid foods. At 8 months he was 19.5 pounds. At 23 months he is still 19.5 pounds, which is ~negative 50%, WAY off the chart. He had cow's milk protein and soy allergies till age 11 months. He currently just has peanut and sesame seed allergies. He also has eczema and asthma. Around his first birthday after 4 months of no weight gain his family doctor and pediatrician began to worry and the testing began. He had extensive bloodwork which ruled out thyroid, kidney, liver, pancreas and blood disorders. He was tested for celiac disease and cystic fibrosis. Shortly after this his height started to be affected too and he essentially stopped growing (He is currently ~3% for his age in height). When he was 17 months old we started seeing specialists in a failure to thrive clinic at our Children's hospital. We spent a year with them listening to every suggestion they made on how to get him eating better. Their diagnosis always remained the same 'he is an active boy with a high metabolism and simply needs to consume more calories'. This seemed ridiculous to us. There are lots of active children (and ours is not super hyper, just normal) and they all still gain weight. Our son is not a great eater, but he certainly eats enough to gain weight, only he isn't gaining weight. After a year at the failure to thrive clinic we told them we would not be returning since they were completely unhelpful to us. A few months ago, at our request, we were referred to an ENT in regards to our son's snoring, sleep apnea (just recently noted), and constant gagging and choking on food. When I looked in his throat it seemed to me that his tonsils were huge leaving a tiny opening for food to pass through. The ENT agreed that his tonsils and adenoids were huge and needed to come out ASAP. He also told us how some kids with severe sleep apnea are unable to reach the 4th and 5th stages of sleep when growth hormones are produced so these children stop growing. We were also told that the increased effort to breath all night long burns a lot of extra calories contributing to his poor weight gain. So, great!! We finally had an answer. He was rushed to surgery 2 weeks later (because this had gone on far too long, the failure to thrive clinic should have discovered this...). We were told shortly after the surgery that he would start gaining weight and growing and that we would actually have to monitor him carefully to make sure he doesn't get overweight as his body tries to make up for lost time. Well that was almost 2 months ago and he still hasn't gained any weight or grown at all. So, it seems likely that the large tonsils and adenoids and sleep apnea were not to blame afterall. Now we are back to square one and approaching 2 years of no weight gain. And believe me the difference between a 19 pound 8 month old and a 19 pound 2 1/2 year old is astounding. My husband and I both 'cry' when we see him naked. He is literally a walking skeleton. He is otherwise a very happy boy who is developmentally on target or above average in all areas. His speech is especially impressive, his daycare teachers said that at 2 he spoke better than many of the 5 year olds in the kindergarten class. He was in daycare from age 12 months till 21 months and he was sick a lot (8 ear infections, throat infections, many stomach viruses....) But now that he is home everyday with me (I am on maternity leave with our second boy (now 2 months old) and Tyler is healthy. He hasn't been sick since he left daycare. Tyler's eating has improved since the surgery because he can swallow better. The choking and vomitting is also much improved. We continue to feed him high calorie and high fat foods, but he still isn't gaining weight. Does anybody have any thoughts? What are the doctors missing????? My husband is so worried (and me too some days) that there is something horribly wrong that is being missed. We love our little boy immensely and just want to be healthy like he deserves to be.
I know you said that the ENT mentioned that with the sleep apnea he does not reach the stages of sleep where growth hormones are produced? And when all of the blood work was done, did they ever check for growth hormone deficiencies? The first thing they would look at for growth hormone deficiencies is a hormone called IGF-1. Growth hormone stimulates the liver to produce IGF1 and it is an inderect method of measuring growth hormone. If this was low or low normal, then they would do a GH stimulation test. This involves the child getting base line blood levels drawn, and then they get an injection of I forget what, but it stimulates the pituitary to produce GH and they also have to swallow a pill (another drug that also stimulates GH production). Blood is then drawn one hour and two hours later. How the GH levels change will give you a true indication of the deficiency.
My daughter Alexis is growth hormone deficient and was diagnosed at 2 1/2. From the time she was 11 months until the time she was almost 3 she only gianed 4-5 pounds and grew only 6 inches I think it was. She was below the 10% for both height and weight for almost 2 years. She is also a very active child, and she just never seemed to really grow or gain weight. Even with nutren jr (like pediasure) she still did not gain weight. After the growth hormone injections started (growth hormone can only be given as injections in children) her height immediately bagan to shoot up. It's taken much longer for her weight to catch up, but she also had a feeding disorder and was eating only baby food until Feb. She's 5 years old now, 44 inches and just weighed in at 40 pounds.
Also, have GI studies been done to make sure that his body is actually absorbing the nutrients from the food? His his digestion proper? Hope that helps.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
mom of child w/ SOD - you and I think a lot alike!!! No his growth hormone levels were never tested because the blood work was done so early in the testing game. I am planning on requesting that test soon if things don't improve fast. I am shocked that the failure to thrive clinic never ran that test (and to be honest pissed off about it too - excuse my language). I am planning to write a letter of complaint to the hospital because they didn't run any tests or do anything during the year we went to them. Growth hormone testing should definitely have been done. Is there a cause for your daughter not producing enough growth hormones? Somebody once suggested a pituitary adenoma to me, but our doctor refused to do any head imaging because our son wasn't showing any other signs of a brain tumor (malignant or benign).
As for the GI testing....that is also next on my list of requests. I want to see a GI specialist (even for his gag reflex and vomitting issues). Hopefully something will show on one of those tests (if we can convince our doctor to run them). At this point we just want to find out what is wrong so we can start treating it properly. thanks for the suggestions!
With alexis, she was born with a condition called septo-optic dysplasia. What that is is a combo of multiple things - she has optic nerve hypoplasia (at 6 weeks gestatio her optic nerves just stopped developing), an absent septum pellicidum (the webbing between the 2 hemispheres of the brain) and with these 2 things the potential for pituitary problems. We have been seeing an endocrinologist since she was diagnosed at 6 months of age. The most common pituitary problem for SOD is growth hormone deficiency. Sometimes what happens (and this is what happened with Alexis) is that the pituitary can start out producing enough for the body, but as the child ages, the pituitary cannot produce enough for the body's demand. She is also adrenal insufficient, meaning that her body does not produce enough cortisol, so any time she is ill, has diarrhea, any sort of traumatic incidence, we have to give her steroids (hydrocortisone). If she is vomiting, we have to go to the ER for IV hydrocort.
I am absolutely amazed that no one even tested for the growth hormone deficiency, especially since his nutritional intake seems like it should be adequate for weight gain. You would think that after all of this time, some doctor along the way would have said, hmmmm maybe we should send her to a pediatric endocrinologist. If you have ins, that doesn't require referrals, I would just go ahead and make an appointment with a pediatric endocrinologist (and the GI specialist). They are the ones we see for Alexis' growth hormone deficiencies and other pituitary problems. I am also really surprised that the failure to thrive clinic didn't do any of the GI testing. When we went to the feeding clinic here, they checked for reflux, upper GI series, and checked her gastric emptying time. I would be writing a letter of complaint as well. I can't believe that the doc refused to check for a pituitary adenoma. You think they would really be trying to get to the bottom of this instead of brushing anything off. If your ins. does require a referral and your doc won't give them, I would seriously consider changing doctors.
Just another thought - how thick is your son's hair? That may sound odd, but a lot of children with growth hormone deficiencies have extremely thin and fine hair. I know Alexis did.
By the way, my name is Jennifer and I usually post over on the visually impaired children board, but just started posting here since Alexis has a feeding disorder and does not know how to chew.
<div align="center">Thanks Alison's Mommy, SillyMama, Katarina and samylaine for my blinkies.</div>
Thanks for sharing your info Jennifer! I live in Canada so everything is fully covered by the government, but all specialists require a referral from a GP or other doctor. I have wondered about a delayed gastric emptying because my son vomits so easily and sometimes the amount that comes out does not match how much was recently eaten. It also seems that some of vomitting seems to be from overeating or drinking (milk). I will get that checked out.
It is interesting that you mentioned hair. My son was nearly bald still until around his 2nd birthday when his hair finally started to fill in. It is still quite fine, but also blonde so it looks like even less is there. I am even more interested in getting his growth hormone levels checked now!!!
Hi girls, I've read both your intro posts and thought I'd introduce myself here. I'm Lisa, mommy to Brandon (two on Wed) and, Jack, due in December. Brandon's issue with weight gain has been he won't eat enough and doesn't seem to have an appetite, which sounds a LOT different that what you guys are experiencing. Sorry I can't be of much help to either of you, just wanted to lend my support. This tends to be a very frustrating road. HUGS.
I don't know much about these issues, since Anna's problem is different, but I am absolutely shocked that a so-called FTT clinic wouldn't check for these things. What do they actually do there??? It sounds like just basic nutritionist services from what you described. Your son sounds like he definitely needs to see an endocrinologist. I'm not totally familiar with this, but I'm thinking that tonsil/growth hormone idea still has some potential with a little more help and guidance from a team who knows what they are doing. I'm so sorry you've had to deal with this for so long. I don't blame you for being upset with that clinic. You do what you need to do to get help for Tyler!
Rosalie, Mommy to Anna (05/06) and Thomas (10/08)