We have done so many endoscopes and a colonoscopy and biopsies in Austria in 2010 and nothing was picked up. I still feel we are missing something. Has this got something to do with mitochondrial disease, another condition or does he have something else - a parasite or something they are missing. I guess maybe one day we will find out. Our poor boy, it's so embarrassing for him when he has accidents. He is 7 years old and shame, he has feelings. Often I have to change him and his bedding at night - last night twice and often the diarrhea ends up running down his leg or up his back. He can be out and about and all of a sudden we have an accident like this. Yesterday at school was one such day.
We haven't had any response from the doctors yet regarding the digestive enzyme medication yet but what I decided to do today was go to the health shop and chat to them. I particularly wanted to get a product called Assimil 8 which is a seven point five product. I have used their products before for both myself and Jason but because of the cost factor could not keep up with it. Anyway I am going to try the Assimil 8 for a while, giving him one capsule in the morning and one at night and see if there is any changes. There are digestive enzymes in there as well as a few other natural ingredients that would be beneficial for Jason. It's worth a try and the good thing it is natural.
Feeding therapy today went well. Sarah is working on his chewing because once food is in his mouth, he doesn't know what to do with it and just ends up swallowing it whole. So this is restricting us with foods and textures. Sarah is continuing to work with his sensory issues by desensitizing his mouth - oral sensory work and today they chewed on carrots. They were chewed and spat out but that is ok. The idea is we are just trying to get him comfortable with having textures in his mouth. Last night I really battled with his cottage pie. As soon as he got a bigger piece of mince in his mouth he would gag and try and spit it out. We don't want him to get to a stage where he is scared of food and textures of food so we are really trying to work on this fast. His dietitian is going to send me a list of soft foods to try that can encourage chewing - basically foods that can dissolve in the mouth. Yesterday at school he ate some cheese. He is doing well with his yoghurt and pronutro at school and sometimes feeding himself. With me at home we are doing good as well but as I say he is battling with the textures and I am a bit restricted to soft foods and battling to think of other ideas. He does great with his yoghurt and custards but I am trying to move away from all the dairy and introduce proper food and not snacks. Drinking is still a big issue. I don't know why he just won't drink his own water or milk. We have to either give it with a syringe or sit with him telling him to sip all the time and drinking milk that way takes far too long. We are working on it. One day at a time.
Having said that, I am just pleased that we are at the stage where I am complaining about what food we can give him or can't give him. A few months ago Jason wouldn't touch food and look at him now. Look at US now. He even put a jelly teddy in his mouth today. He spat it out but he put it in and that is the main thing. He put it in and he tasted it. His sister is a huge supporter of his and is always there to lend a hand, teach him how to chew or steal his food :-).