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Post by Teresa on May 26, 2009 12:54:25 GMT -5
Thanks I will. He goes tomorrow to the children's center. He already has a pediatric neurologist, behavior doctor, genetics doctor. his psychiatrist went to a residential faculty. So I am looking for a pediatrician and psychiatrist. The doctor that decide he was to much was just are family doctor here in the small town we live in. All the other doctors are 45 miles away and the family doctor only treated sore throats, ear infection, the minor childhood illness.
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Post by y on Jun 3, 2009 23:09:30 GMT -5
Teresa sorry to hear of your dr. problems too, Its is better you learned what he was like now then during an emergency. My child also started speech problems at this age. He spoke with stutters and running all his words together. Unfortunately I am afraid it is just another part of the Battens. My son also would be walking and just fall, like you describe. It is a neuro problem and again another part of the Batten process. My son would lean back like that too, especially if he was tired or had walked a lot. As he got older it became more of how he walked. He also seemed to lose his sense of balance early. He always had to have a hold of something or he would get all disoreintated and fall. As for not eating on those days you need to do what you think is best for him. If he is getting enough fluids and eating well on the days he does eat, it may be best just to let it be, it may just be a stage he is going through. I know my child went through these "stages" a lot. He also had the headaches, does he have any vision left, it could be contributed to eye strain. I always gave a tylenol and a cold compress, It worked! Sorry so long but your concerns so hit home with what we went thru. Hang in there!
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Post by Teresa on Jun 5, 2009 1:55:01 GMT -5
Thank you all. Sorry it has taken so long to reply. He did go see the new doctor and she was really nice. She had never heard of battens disease but said she would research it .We are now keeping a food dairy and weighing in every week and for the headaches she said to let her know when ibuprofen and Tylenol stopped working and she would get him something that would help with the pain.
He is totally blind. I think he gets a glimpse of light or something sometimes because he will be staring then he rubs his eyes like he is trying to sees something that has disappeared but he says no and wont talk about it. Then it could be just me trying to figure out everything.
thanks again, teresa
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Post by corrina on Jun 5, 2009 21:14:08 GMT -5
I'm so glad you found a new dr.
I think a lot of kids who have vision loss rub thier eyes because that produces lights and colors. You can get that effect yourself when you rub your eyes however, people with vision typically don't do it because, well, they already see lights and colors.
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Post by rreneedoyle on May 21, 2010 11:50:32 GMT -5
dear teresa, I have a son that is now 19 going on 20 in july...I have experienced all that you are talking about...the repetitive words....this is his brain stuck...for a little bit....similar to a seizure...this will stop...dont get upset....he would call for me...mom...mom...mom...and I would say I am right here....okay buddy..I am right here...he didn't know that he was repeating himself...also went through the falling over...found that it was the topamax that he was put on for seizures...double check the side effects of all his seizure meds. I would love to help you in any way...I am on face book Robin Doyle Bristol CT...contact me anytime.. Robin from CT
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Post by rreneedoyle on May 21, 2010 11:53:10 GMT -5
Question for juvenile battens disease children? My son is starting to fight eating clinching his teeth and turning his head...we feed him and usually he has a great appetite...he has lost 11 pounds in 3 weeks and we do give him ensure when he wont eat...how do you know when it is time to think about alternate feeding routes.? thanks Robin CT
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