Onfi

I never started Onfi daily. I was trying to do only every 3 days. But Reggie was still having same amount of seizures. Today we will start Onfi 10mg every am and possibly 2-3 times /day. I realized I can handle Reggie's disabilities but his seizures cause a significant hardship; emotionally, physically, and financially. Please pray we can stop the seizures.

Onfi or VECTTOR

Reggie cycle has changed. Not really having good days. I don't know If it is from the Onfi (every 3 days) or doing the VECTTOR daily. Thursday morning Reggie had a grandmal seizure first thing in the morning. I gave him Onfi 10mg and did the VECTTOR machine to try to increase his ketones and decrease his glucose. He had a great day at school. Friday he woke a little shaky but I did not give him the Onfi because it was suppose to be a good day for him. I did do the VECTTOR machine. All day was shaky. Today Saturday he is shaky still. I did VECTTOR again today and Almost had a Grandmal several times.

I have talked with doctor Saine and Reggie is on lycopodium 200c which is directed toward his cough, but should help his seizures and function.

Onfi

Just when we think Reggie is on a clear schedule he has a seizure on what is suppose to be a good day. We have been giving him onfi on his bad days and he has less Grandmal seizures. But today was suppose to be a good day. Today we wills start with daily Onfi 10mg. I am vet reluctant to use this med but I have to give it a fair try.

HBOT

Thanks to Valery Cabrera Reggie gets Hyperbaric Oxygen Therapy (HBOT) at home. HBOT increases oxygenation to his brain to promote healing and increases stem cell production. Our plan is to put Reggie in the chamber on the days he has a seizure.

We stopped using the VECTTOR temporarily, because it changed his seizure schedule.

Homeopathy put him back on Nux Vomica

Medication. A new benzodiazepine derivative ONFI will be used PRN for seizures.

EEG biofeedback at least 3 times per week.

3 is officially Reggie unlucky number.

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.

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.

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