Recovered well

Reggie has been home for a few days. He is tolerating 350cc of bolus feelings.

Reggie is on depakote 750mg TID for seizures. He has better seizure control. You can follow his seizure log in the blog.

He is still coughing on his drool. Have given 1mg of robinol to dry secretions. It doesn't seem to be helping that much.

Grandmal Seizure log

May 30 GM 8pm. Several days small seizures

May  9 little seizures
0 May 7 started Depakote
May 3. (3) GM 9am. 11am. 5pm.

April 30. GM 10am
April 28&29 G
0
April 22. 1GM at school
April 21. 2 GM
April 20. 4 G trileptal only
0
April 12. 2 GM and 4 G in hosptial decreased depakote. Weaning off. Starting trileptal
0
April 1. GM
0
March 23. 2 GM at family reunion. Naratriptan
?
March 5 GM 6:40am. GM. 10am
0
Feb. 22. GM 3am
0
Feb 15 GM 8am
0
feb 5 GM 6pm
feb 4. GM 12 midnight
0
Jan 31 3 G GM 4pm
Jan. 30 G
0
Jan 27. GM. 9am
Jan 26. GM 9am (changed/silent)
0 6 days
Jan. 19. Numerous G
0 3 days
Jan. 15. 3 G 1 GM 5:30
Jan. 14 6G (chiro)
0 1day
Jan 12. 1GM 10:30PM
0 1 day
Jan 10 1 G
Jan 9 1G
Jan 8. 1G
Jan 7 1G
Jan 6. 1G
Jan. 5. 7am. GM 3G
Jan 4 11am GM 2:30pm GM
Jan 3. 3 G
Jan 2. 1 G
Jan. 1 GM 2:20am 2 G
Dec. 31 GM 4:15am 1 G
Dec 30. 3 G
Dec. 29 1 G
Dec. 28 3 G
Dec 27. 2 G S1/2
Dec 24. GM 3am. GM 11am S
Dec 23 GM 3am

Depakote 750mg. TID

GM = Grandmal
S=sleeping all day
M= myoclonus
G=generalized

Post surgery

Today is second day post op and Reggie is still in a lot of pain. He has been getting 0.3mg of morphine every 6 hours. Surgery hasn't cleared him to be feed. He is resting.

No Dilantin. Yes depakote

Reggie has had significantly more brief and generalized seizures on Dilantin. Although the actually number of Grandmal seizures slightly decreased. Reggie had very few good days on dilantin. They added depakote but seizures are the same. Today they discontinued the Dilantin and will stay on depakote.
Reggie has been on depakote in the past and still had 3 seizures every 3 days. We chose to go back to depakote because at least he had some control and it is the treatment of choice for myoclonus and DRPLA Seizures. Miah is well controlled on depakote.

Fundal ligation.

We finally figured out what is going on with Reggie. We are at Miami Children's hospital and he has severe GERD. Reggie finally got approved for fundal ligation surgery Thursday 12/20. We believe the following symptoms with resolve after the surgery.
Pain
Crying
Reflux
Cough

Seizure cluster

Seizure cluster is not well defined. We documented a seizure Wednesday. Than Thursday Dec. 3. Exactly one week after the last cluster was a very shaky day. Friday Reggie had 2 grandmals and lots of partials. Saturday he had one Grandmal in the morning than began to recover.

Chin. Ars. 200c. We gave Reggie 3 doses Friday after his second seizure and a dose after his Saturday seizure. It does seem to allow him to recover faster

Seizure

Started the day crying. Seem to no want to be feed through the tube. He went to school and had a seizure 1:30 seizure

Seizure but happy

Reggie had one Grandmal and several partials, but he is happy and alert. Happy to see his mommy come home from a Navy trip

5 seizures over 3 days.

Reggie had a seizure cluster over Thursday and Friday. Reggie started Thursday shaky. I gave a dose of chin. Ars. 200c. Couple hours later e had his first Grandmal seizure. I'm not convinced the remedy and seizure cluster is related, but we will be watching that.
Reggie ended up having 3 Grandmal seizures on Thursday's one on Friday during the day and one Friday middle of the night.
Reggie woke up today Saturday happy and alert. Reggie is still on Dilantin 100mg. TID