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----- UPDATE----- Please! Please read and help me!

Fri, 05/13/2011 - 02:08
Please take time to read this and tell me what you know. I am desperate for answers. History- My son had his first seizure at 14 months old. Triggered by an unknown. He was sick at the time. He had, had little to eat for a few days. He ended up having 5 Grand Mal seizures in 24 hours. Now, he is 2.5. He is on 64 mg of Phenobarbitol taken once a day. He still has seizures about weekly. He is not very verbal. He pronounces words weird, almost like he can't hear. He walks strange. He hates making eye contact. He often wanders around the house destroying things or watching t.v. He is not the same little boy since before the seizures. He has had EEGs. He has frontal lobe seizures. He has had glucose testing. He is in OT, PT, and ST. Often he ignores his therepists. Thhhheeen Now- two weeks ago he got a double ear infection and was given Amoxicillin. About 4 days into his dosage, we began to see some major changes. No seizure activity. He is making eye contact. He is talking in two or three word phrases. He WANTS to talk to me. He WANTS to look at me. He WANTS to hug me. He has done things in OT, PT, and ST that they have been trying, unsucessfully, to get him to do for 8 months. He is trying veggies again, despite texture issues. He hasn't had veggies since his first set of seizures. He is sleeping well. He is playing WITH me!!! He is so different. I need to know why. I NEED to know what this means. Is it possible that the behavioral issues were from bacteria in his gut, as parents with Autistic children often think? And maybe the anti-biotics killed that bacteria? Or maybe it has to do with an underlying strep infection, something like PANDAS? Or maybe he constantly has low grade ear infections. Please tell me your thoughts, any thoughts. I know the neurologist is not going to believe me. But, I don't want him to go back to the way he was before the antibiotics. For the first time in a long time, I feel I have my baby back. Please help! Just an update: Our neurologist was SO impressed by the impact that the amoxicillin had on my son's behavior and seizures that she is going to prescribe amoxicillin to be taken over long periods of time at a low dose. We found a trial in San Diego that is linking amoxicillin to protecting the brain from frontal lobe seizures or sparks. This is amazing! We are going to combat negative side effects like diareah and thrush with probiotics and gut flora meds. So thrilled! This has REALLY and TRUELY made a difference in my son!

Comments

Re: Please! Please read and help me!

Submitted by dolli on Fri, 2011-05-13 - 14:33
That's amazing!!! I would get written statements from all therapists your son deals with and show any and all doctors until someone believes and listens to you!

Re: Please! Please read and help me!

Submitted by judesmommy on Sun, 2011-05-15 - 12:49
stopped the antibiotics last night.... I know now that my feeling is legitimate. I found a study in San Diego where Dr.s feel that amoxicillin has the power to stop frontal lobe sparks. It is just a study though. If our neurologist doesn't believe me, I will contact them! This could be big, for everyone with frontal lobe seizures!

Re: Please! Please read and help me!

Submitted by foxtrot on Fri, 2011-05-13 - 16:07

I am happy to hear things are going better for your son

i can't tell you why, but i can tell you this

 

If you understand, things are just as they are.  If you don't understand, things are just as they are.
ZEN BUDDHIST SAYING

 

 

i hope things continue to improve I can tell you love your son with all your heart and more

 

Don't cry because its over,  smile because it happened.
Dr. Suess

 

 

 

Dustin

I am happy to hear things are going better for your son

i can't tell you why, but i can tell you this

 

If you understand, things are just as they are.  If you don't understand, things are just as they are.
ZEN BUDDHIST SAYING

 

 

i hope things continue to improve I can tell you love your son with all your heart and more

 

Don't cry because its over,  smile because it happened.
Dr. Suess

 

 

 

Dustin

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