Reggie is currently off all medication and his VERY distinct cycle has returned. He is having around 3 Grandmal seizures every 3 days like clockwork. No practitioner can explain or break the cycle.
He is still on the Cic 10m homeopathic remedy, but it doesn't seem to help. One major change is that he does sweat now. For many years he didn't sweat.
Ketogenic diet is 1800kcal 4:1. But his ketone levels drop into the 1.0 range and therapeutic is 3-5. BOH. Waiting on Dr. Rhodes (VECTTOR) protocol to see if he can get the glucose down and ketones up.
Started EEG biofeedback. Fz to Pz increase SMR. decrease Delta. This should help Reggie organize his brain and ultimately decrease his seizures.
Monday, September 24, 2012
Wednesday, September 12, 2012
Improvements.
We have been busy and have lots to share.
Reggie went to Miami Children's for his neurology and ketogenic appointment. They adjusted his VNS to 1.5hz (21seconds long) every 90 seconds.
They increased his fat intake 1800 kcal at a 4:1 ratio.
They were very hopeful that Reggie might become seizure free. Pilar , the NP and Ceci the Dietian were both going to the international ketogenic conference and we plan to hear from them about their experience.
They also discontinued the Topamax. Tonight will be his last dose.
The Homeopathy, Dr. Saine says that Cic is still the remedy that is strongly indicated. We have increased the dose to 1m.
Met a new chiropractor Dr. Bagnel. Who did a scan on Reggie that revealed dysfunctions. (surprise!! Lol) The most prominent dysfunction is Reggie Thalamus. We have purchased color therapy and tuning fork equipment to begin stimulating the Thalamus we have also agenda to the Thalamus in Bodytalk and NFP.
Reggie also broke out in that rash again. The homeopathy believes it is from his seizure medication. We are in the process of taking him off his meds.
Reggie went to Miami Children's for his neurology and ketogenic appointment. They adjusted his VNS to 1.5hz (21seconds long) every 90 seconds.
They increased his fat intake 1800 kcal at a 4:1 ratio.
They were very hopeful that Reggie might become seizure free. Pilar , the NP and Ceci the Dietian were both going to the international ketogenic conference and we plan to hear from them about their experience.
They also discontinued the Topamax. Tonight will be his last dose.
The Homeopathy, Dr. Saine says that Cic is still the remedy that is strongly indicated. We have increased the dose to 1m.
Met a new chiropractor Dr. Bagnel. Who did a scan on Reggie that revealed dysfunctions. (surprise!! Lol) The most prominent dysfunction is Reggie Thalamus. We have purchased color therapy and tuning fork equipment to begin stimulating the Thalamus we have also agenda to the Thalamus in Bodytalk and NFP.
Reggie also broke out in that rash again. The homeopathy believes it is from his seizure medication. We are in the process of taking him off his meds.
Monday, September 3, 2012
Less seizures but no energy
Last week the ketogenic practitioner increased Reggie fat intake 5 grams of MCT with every meal and 10 grams at night. He is having less Grandmal seizures, but doesn't have much energy. He maintained his 63lbs
The Alpha stim seems to help a little when he isn't having seizure activity.
He is on the same schedule of seizure activity every 3 days.
Uncle Reggie holding baby Trent
The Alpha stim seems to help a little when he isn't having seizure activity.
He is on the same schedule of seizure activity every 3 days.
Uncle Reggie holding baby Trent
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