I love my Kai. He is so sweet and special. I admit when I first found out that he had ONH I was terrified and worried myself sick. I made the mistake of using the internet to find out more about ONH and everything I found was just terrifying. But Ill share this. Kai had a ct scan before he was diagnosed with ONH, they thought there was water or blood on his brain and his father and I were confused and afraid of the medication used to put him under for an MRI so despite the risks we agreed to a ct scan.(they refused to let us go home even thought we had an ultra sound schedule to check his brain they seemed to be convinced we were abusing him, even told us that if his ct scan came back with any problems social services would be called... we had to talk to a social worker anyway. ) Every thing came back normal, he had no fluid on his brain and those same images were used to check his pituitary gland when he was diagnosed with ONH which his pediatrician also said was normal. between 3 and 6 months he had hormone testing done, and his hormone levels came back normal. we will still have to go back every year for hormone testing just in case. Right now other then vision problems he is a completely normal little boy who is showing symptoms of autism. My son is not so mentally disabled that he will never function in society. He will be slower then most kids and will have to catch up mentally and physically. By no means is he for lack of a better word dumb or stupid. Just different. A month back at his nine month well check his pediatrician showed concerned for how rapidly his head was growing. We will have to go back on sep 5th to check and see if it has grown anymore and if it has they will run more tests. He also gets another eye exam on the third. I admit I am absolutely terrified, but there is nothing to be scared about because ONH is non progressive, which means it can not get any worse. With therapy it can get better but I take solace that it can not get worse. I have to keep telling myself that we are not going to find out that it has progressed and his pituitary gland does have problems. I wanted to share with you all a little more about Kai because I feel like some of you do not understand. Along with is ONH he has stomach problems, I have to be very careful what I give him because he has a sensitive tummy. I can not give him sweets and junk food because it makes him really sick. He gets bad gas and spends the entire night crying and his stomach making awful noises. I give him what the doctors say will be easy on his tummy. one last thing if you are still reading, I know Kai is different from other kids, I know that he is not doing as much or talking as much and what I wrote above should explain to all of you why that is. You do not need to point it out to me that my Son is not doing something that other kids are doing. You also do not need to point out his eye to me. I understand that you may be concerned and you are more then welcome to share that with me or ask about it. But saying "hey do you see the way his eye is rolling around in his head." is something I do not need to hear. I notice it. He can not help it and there is nothing I can do to stop it.
Posted on: Mon, 19 Aug 2013 23:27:01 +0000
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