Partial seizures

Reggie had a partial seizure today and one yesterday. Both were because he was woken from sleep. Pressure on the Accupunture point under the nose stopped the seizure.

Day 3 Grandmal seizure

Reggie pattern is changing. This is the third day of seizures. Yesterday after his seizure he recovered fairly quickly. And he woke this morning ok. But he toke a nap and had a Grandmal seizure upon waking. Still giving plum met 20m every evening. And cuprum 200c every morning. Gave another cuprum 200c after his seizure.

Day 2 Grandmal seizure

Yesterday he began to recover from his seizures. He got up and ate. He was very shaky but alert. Restless last night. Gave plum met 20m. Slept through the night. Woke at 7:45 with a Grandmal seizure. Have cuprum 200 after seizure

2 Grandmal seizures.

Last night during therapy he started to have a few mynoclonic jerks. After therapy and feeding he started crying. Gave chel 200c because I thought he might be in abdominal pain. It did not help. Put him in bed and he went right to sleep, he must have just been tired He had 2 Grandmal seizures. At 1:30 am and 7am. Slightly less intense than they have been in the past. Gave Cuprum 200c after each seizure.

Homeopathy

Traditionally constitutional homeopathy using only one remedy at a time. That is how Dr Andre Saine has prescribed for Reggie in the last 2 years. Obviously Reggie is continuing to get worse. After a long conversation today Dr. Saine's prescription is as follows.
Continue Plum met at increase dose of 50m every night. Because plum met has clearly helped with restless sleep.
Give Cuprum 200c or 1m every morning for seizures. Give more frequently with seizure activity.
Lastly give chenlidoum for his more recent abdominal pain. Give 200c every 5 minutes to stop pain.

Grandmal seizure

Reggie had a partial seizure while on the lower body electric stim machine. E3A2. Even though it said "need new protocol" there was a significant temp increase over all the combos. While on 117BL black/yellow only he had a Grandmal seizure. Starting temps were 82• ending we're 92•. Looks like when it works it triggers a seizure. But last time he recovered quickly.

We have also increased the lamictal to 150mg BID. He is still on the neurontin 300mg TID

Crying / screaming / ataxia / seizures

On and off all day Reggie has been in pain. At first simethicone (for gas pain) was helpful. But it stopped helping. Plum met. 20m seemed to help with little seizures but nothing for the pain. Gave a combination of Prevacid and simethicone.

It also appears recently the ataxia is getting worse. Medication increase or VECTOR, or just progression of disease

Rubber-ban man

Ruth calls Reggie the "rubber-ban man" because he always bounces back. Well he proved that true today. He is good today and at school

Miami children's ER

Reggie pulled out his Gtube last night. Must have been out a long time. Because the stoma is closing. I was not able to get the tube back in. I put in a. 10F suction tube. On our way to MCH.

After some complications, drama, and a seizure we are home. Reggie has a working Gtube and is feeling better.

Finally a good day

Reggie is feeling good this morning. Smiling, trying to talk, laughing at me and waiting for bus. :-)

2 Grandmal seizures

Reggie had a seizure at 3pm :-(. Dr Naqvi neurology did call back. He increased lamictal form 100 to 125mg BID. Retake amylase in 2 weeks. Amylase was still 131 last visit. I am concerned that the lamictal is causing the elevated amylase, but Dr. Naqvi doesn't think so. Gave the higher dose but Reggie still had another seizure. This seizure was over 2 minutes and he stopped breathing. He is now resting quietly.

Myoclonic seizures

Reggie is happy, but having continuous Myoclonic seizures for 3 days. I have given multiple doses of Plum 20m without improvement. He has been doing his electric stim as well. Dr. Rhodes is changing his electric stim protocol and I am waiting on Dr. Naqvi. Neurology to call me back about his medication. I am concerned that Dr. Naqvi will want to increase his Lamictal again and we haven't gotten a recent Amylase.

2 Grandmal seizures

First seizure was in his sleep at 1:30am. Second was after getting him out of bed at 7:30am.

Grandmal seizure.

May 8th ended up being an ok day. However, 1:30am Reggie had a Grandmal seizure

Rough start

The last two days were good for Reggie. This morning he didn't want to wake up, and was having seizure activity. We gave breakfast through the tube and Plum met 20m x4 doses. He made it to school but he is sleeping a lot.

Minocycline

There is some evidence that the tetracycline called minocycline could improve symptoms of DRPLA, by preventing the destructive protein from replicating. Current studies are showing improvement with Huningtons chorea, which is genetically similar to DRPLA However, Reggie is fragile and it wouldn't be prudent to experiment on him. Today we started our own experiment on another DRPLA case. 100mg BID

3 Grandmal seizures

Yesterday was Reggie birthday party and he had a great time. Swimming. Dancing. And eating good stuff. Unfortunately, he woke shaky this morning and had a Grandmal seizure. He had a second seizure at noon 3rd seizure today.:-( Today is Reggie's Birthday he turned 13. Happy Birthday big guy. I love you.

A OK

May 2 was pretty good day, today is an OK day. Reggie having a lot of monoclonic jerks but happy. Getting ready for his birthday party tomorrow.

Shaky days

Reggie has not had anymore Grandmal seizures but having a lot of monoclonic jerks and sleeping a lot. He is getting plum. met 20m 4-6 times a day