Thursday we took Kennan to see the pediatric endocrinologist. She told us that the two test that had come back slightly above normal were not at a level of concern. She is still waiting for a copy of the x-ray from the geneticist's office. But more or less ruled out the two syndromes that the Geneticist was still concerned about. She diagnosed Kennan with a disorder that causes his body to produce too much insulin. It is the opposite of being diabetic (although in the end he could become diabetic). Because his insulin levels are almost always raised it means he is constantly hungry. When he eats his body registers this and causes the pancreas to produce even greater levels of insulin. Thus a vicious cycle commences and the body gets far more food/nutrients than it needs or can use. So the end result is weight gain - usually quite a bit. These kids usually end up being obese at an early age. And it is nothing that is their fault or that can be completely controlled. Plus there is no cure.
She also told us that you usually don't find an exact cause - there are many different possible causes. These can include family history of diabetes, gestational diabetes, biological mother being over weight during pregnancy, diet/nutrition during pregnancy, high stress levels during pregnancy, lack of proper medical care/vitamins during pregnancy, exposure to alcohol, nicotine, cocaine (other drugs) during pregnancy, general life style, and plain old luck of the draw. Since we have limited knowledge of family history there are several factor we can't get a good handle on. But there are also several that most likely added to his risk factors such as: high stress level during pregnancy, lack of prenatal care, diet/nutrition during pregnancy, and prenatal exposure to nicotine, alcohol, & cocaine.
The visit also means that an FASD diagnosis is very likely now. Since just about everything else has been eliminated. Which is both good and bad. Good because we know what we are dealing with (not that we didn't before) from a medical stand point and can seek appropriate helps/treatments. The bad is that there is no cure for an FASD. It's permanent. Also bad because it is 100% preventable.
Sunday, December 18, 2011
As of yesterday morning my Christmas Tree had nothing on it. And I mean nothing - not even lights. We thought we might even have to take it down. Holidays can be very trying for children with emotional and behavioral challenges. Multiple changes in schedule and a ramped up air of excitement/energy can make it very difficult for these kids to self regulate. It leads to more melt downs and tantrums. Both of which we have seen for Kennan. But after some thought we purchased a small quantity of shatter proof ornaments and some ribbon and will redecorate the tree today in hopefully a less stimulating way. Maybe it will help Kennan to better self regulate. He is trying so hard to be good - he loves the idea of Santa and wants him to visit. We as his family are praying for a miracle in the form of a 4 legged friend to help him. In the meantime we make changes and continue to search for other ways to help him also.
Monday, December 5, 2011
Friday I spent the better part of an hour on the phone with the nurse at Kennan's Geneticist's office. The test all came back normal with the exception of two. He had an elevated level of phosphorous and an elevated level of another group of elements that they wanted to check out. So it rules out every thing they were testing for with the exception of two syndromes. And it elevates the likely hood of a full blown FAS diagnosis to the top of the list. We are being sent to see an Endocrinologist on the 22nd of Dec. for further evaluation. Even if they diagnose Kennan with one of these two other syndromes it doesn't rule out an FASD. However, if he test come back negative for both of the other syndromes he will be diagnosed with an FASD.