im in search of answers. Ive already contacted and been flying all around the USA to differant doctors and specialists in these areas:
Endocrinology
Gastroschesis
Arthrogriposis
Diatitions
Theripists
Genetisists
Orthropedics
Heres some back up infor. my daughter was born 5 weeks eary due to Gastroschesis (an intestinal problem where the intestins grow outside of the body) this was corrected within 2 months after birth.
She was also born with Arthrogriposis, which is a muscle condition where the muscles are very very small or none existent in some places on the body, also there are contractures of joints. She only has mioplasia without any brain effects. and its only mild. she only has it in her arms and she's doing really well learning new things.
With the arthrogriposis this means that she is expected to be smaller then normal and probably fall in the 3% for growth all around. However, there should still be growth.
She will be 3 on november 7th and she is only 18lbs. shes only gained 2lbs in 2 years ! she had some eating issues but wehave pretty much achieved success with eating now and she should be eating enough to grow. but she's not. her head size is normal. but she's dropped into below the 1%. she is normal in behaivoir, not week, sleeps well, and developmentally fine in all other ways-aside from mobility due to the arthro.
its been discust that she might have arare small person syndrom of some sort but everytime i research i can't find anything. im still on the search though and will continue to be untill i have answers.
has anyone had simular situations? i want to hear anything you have to say even if ive heard it before it couldn't hurt and someone is bound to say something i havn't heard. I would like to only stick to simular storries for this paticular thing though. as in if you have a 2 year old that only weighs 25lbs then we really arn't in the exact same situation inlless at some point you had the same situation.
remember she's only gained 2 lbs in 2 years.
sorry if there are alot of typo's, the computat im using at the moment isn't letting me see the text that im typing and it makes things kind of confusing.
I didn't want to come off too short but at the same time im trying to find answers without giving our entire story. atleast not right this min. :)
Arthrogryposis is a rare condition, but if you look at waiting international child adoption websites, there are so many children affected by it. And people are adopting them all the time!
Her doctor doesn't have any advice? Doesn't she see a specialist for the artho?
Wow, you have much to deal with. I am proud of you as a Mom - you are clearly doing your absolute best to help your daughter!!!
I have not experienced this is any way, but my child was born early too and had trouble gaining weight - he turned out to have severe food allergies. I know, you don't want ANOTHER thing to deal with, but it may be worth having blood tests run for IgE and IgG food allergies/sensitivities.
BLESSINGS TO YOU AND YOURS!!!!
I know you have a lot to process and it's hard not to have answers. I realize that the weight issue is just one of many challenges you're trying to get to the bottom of and the previous comment about looking into what might causing her not to absorb the calories is a great one. To help with getting more calories without adding more food we had to supplement with Douocal -- it's a powered form oil that can be added to anything liquids, food without chaning the flavor. It was initially perscribed by our doctor but you can get it over the counter at Beaverton Pharmacy -- you just may need to ask your doctor about the amount to give. We also saw a nutrionist who suggested calorie boosting ideas for foods our daughter already eats -- use heavy cream to make mashed potatoes/sweet potato, add olive oil to vegatables, etc.
If it hasn't been done yet check blood sugars for diabetes. It is a symptom..eating plenty but not gaining weight..or eating only enough and gaining too much...it can go both ways I've been told. Thyroid issue? I know in a lot of thyroid cases go toward the gaining side as well, but its a thought. I am sure she has been tested for just about everything but check into genetic history of both sides of the family, and see if perhaps something else is there. Juvenile onset diabetes, MS, ...with I could come up with more off the top of my head. This does sound like a metabolism problem though.
My daughter doesn't have the added complications, but she did fall off of her chart in height. She started at the 5th percentile and dropped to 0.1 percentile. She was only about 12 lbs and wore 6 month clothing at 1yr. It was pretty funny to see this baby about the size of a 6 month old walking and talking. She had a very extensive vocabulary for a 1 yr old.
I'm short and we just chalked it up to be my strong short genes. But, her ped. kept offering a referral to an endocrinologist. At 3, we finally took him up on it when her height had dropped to the 0.1 percentile. It turns out that she didn't have any growth hormone deficiencies, but was behind in growth plates in her wrist. They diagnosed her as small for gestational age and recommended growth hormone. She is now back up to the 5th percentile after 1.5 yrs of growth hormone shots. Once she started the shots, she started eating everything in sight. She grew stronger and was able to keep up with the other kids again.
A friend's dd also was small and they did many growth hormone tests before they finally found that she was defient in her insulin-like growth hormone. It isn't one that they look at as often (more rare to find) and she was not behind in growth plates, just very tiny. She is now catching up, too and is much stronger with a large appetite, too.
One other thing to check. We found this out at our ENT visit for my daughter's tonsils. They were huge and causing sleep apnea (snoring, too). But sleep apnea can be a cause for a child to slow on growth. They aren't getting the sleep cycles that they need in order to go through the growth patterns during sleep. Tonsils and adenoids could be something to look into. Does your daughter snore or stop breathing at night for a breath or two?
Wish you well and hope you can find the answers you need.
Oh, check the Magic Foundation, here is their website: www.magicfoundation.org
They have info. on growth issues and might be able to give you some information. There also might be someone with a child or family member that you can talk with that is experiences similar issues as your daughter.
I most definitely do not have nothing similar to this except I have a 7 year old who only wieghs 40 lbs. We could not get her to gain wight at all. I have worked in a facility where i had children like your daughter and one way they helped these children to gain weight was by allowing them to drink pediasure with all meals. For example: For breakfast you would put half of it in her cereal andrefridgerate and use the other half for her to drink with her mid morning snack before lunch. At lunch allow her to drink half with her meal and then refridgerate the other half and allow her to drink it with a snack and so on with dinner time. Now the types of meals she would eat are the food in which is healthy for her that she likes and even in this case anything she likes. I hope this helps you with the weight gain issue and i sure will be praying for u and ur little" angel". GOOD LUCK!!!
It sounds like you've done a lot of leg work. Who is your healthcare team leader for your daughter? Is he/she concerned about the weight gain or providing any suggestions about what to try next? Do you have a case manager through your insurance? Sometimes an assigned RN from the insurance company can be a great resource for what to try next. You might also try writing up for yourself everything that you've looked for and what you've found (positive & negative) to see if there is an area that hasn't been covered.
The food allergy suggestion is a excellent one because those type of allergies tend to develop over time, maybe something that she is eating is interfering with her ability to process the calories. Other things to think about are if she’s getting enough oxygen and circulation (heart/lung complications), this isn’t likely to be a concern but something to think about perhaps.
If you're looking for information about a small person syndrome of some type there is a Little People Association that would probably be a good place to start asking questions about resources. Their Web site will come up on a Google search.
I was born weighing 7 lbs 6 oz. At one year I weighted 13 lbs exactly. I didn't have any of the conditions you have mentioned, but was labeled "failure to thrive." When I was a child, pedia sure didn't exist. My mother put half and half in everything she could. (to this day, I love half and half in cornflakes, but since I'm ah hum....a little more than normal weight now I can't do that :(). You say you've been all over the country. Have you been to Children's Hospital of Philadelphia yet? My children have an incredibly rare disorder as well and we have been impressed with the care they have received at CHOP. Good luck!
S.
I was thinking the same thing as the lady who suggested the pediasure, something like that. Some kind of milk shake that has stuff in it to help gain weight. Something like what athletes use. Sorry can't think of a name or indgredients. Kudo's for you though. You are a good mom, and hang in there.
