We started klonopin 0.25mg at night and Reggie had less seizures. 15 grandmals a month, but he has seizure activity almost constant and he doesnt really do anything anymore.
Most days he just sleeps in his chair. On his good days he will smile and interact for a few minutes at a time. A couple times a week we can get him to bear weight and take a few steps but we are doing most of the work.
Reggie vitamin D level has always been around 22. Normal levels are above 30 for bone health. I recently met a doctor that explained Vitamin D in relation to neurological and immunity health. see article
We started reggie on 3,000units of vitamin D and 2,000mg of omega 3 in July. The doctor said it could take 6 months to see full effect. He is healthier, but seizure patten in the same.
August had a total of 24 gradmal seizures, an additional 7 days of multiple generalized, lots of sleepy days, and 5 good days.
Taking Depakote 250 TID
Vitamin D 3,000units
Omega 3 2,000mg
After a week in the hospital we are finally being discharged, diagnosis "rare" reaction to Trileptal. Reggie has many nicknames. Rare Reggie.and rubber band man he showed us this week.
After Reggie's initial thamalic storming was stabilized, he still want not ok. On a repeat CPK he went from 1000 in the ER to 20968. I immediately requested to stop the Trileptal, he began showing signs of improvement within 12 hours.
He did have a grandmal seizure today, but we are going home to establish a new baseline before adding any medication.
In 24 hours off Trileptal his CPK was down to 4000. Reggie liver enzymes are also 10 times what they were upon admission. We will recheck in a week. It could be Reggie just detoxing of the Trileptal and metabolizing the CPK. If liver enzymes are still up he week have to come off the Depakote.
I follow a family in Portugal with DRPLA. A young boy with DRPLA died last month. He presented to the hospital with pain and fever. Neither of which the doctors could control.
May 15 we brought Reggie to the ER with severe pain, kicking and thrashing, and he began to develop a fever in the ER. Tachycardia, tachepnea, fever 103. Not responding to antipyretics. The neurologist diagnosed "thamalalic storming", also called sympathetic storming. We are still in the hospital and we don't know exactly what is going on, but Reggie is improving. All I can document is what we have done.
1. I refused clonidine the medication to treat storming.
2. I started prayer chains that initiated over 100 people praying. Praying for wisdom for me and safety and healing for reggie.
3. I considered refusing all meds, but eventually agreed to his seizures meds.
4. Chiropractor came to hospital. Gave an adjustment and diagnosed subclinical parasites (which was not confirmed with medical testing)
5. Gave oregano oil through the night in the ICU, and simulated the acupuncture point for parasites. (He rested) Started Total Para along with the oregano oil after his 3 rd episode of what they are calling storming. Continue to stimulate the acupuncture point for parasites.
6. All medical testing is normal except KUB showed excessive stool. They gave laxatives. Doctors are saying they are two different issues, but I'm not convinced.
If thamalic storming is the correct diagnoses it's an indication of progression of DRPLA.
