Botox

Reggie got botox injections. 30cc in bilateral submandibular glands. In 7 days we should see a significant decrease in this saliva production.

Cough

I have spent the last couple weeks trying everything for Reggie cough. We have seen the acupuncturist, chiropractor and homeopath. All remedies didn't improve the cough. Reggie actually began having milk white nasal discharge. After trying everything we started minocycline yesterday. White Sputum is gone, thr cough remains, but not nearly as bad. Reggie is scheduled for Botox injection into the salivary glands Wednesday.

Phosphorus 200c

Gave a report to Dr. Saine. Homeopathy. Priority symptoms being his swallowing and saliva aspiration. Ordered phosphorus 200c. We should see improvement within 5 days. We will hold Robinol over the holiday weekend and giving immune boosting foods and the remedy

Off ketogenic diet.

Reggie has been on the ketogenic diet for over 6 months and as you can see by this blog, It has NOT been a good 6 months. We will give him a trial on a regular diet. If his seizures increase we will have to consider returning to the ketogenic diet. We are also interested in trying Trehalose (type of sugar). Trehalose can't be used with the ketogenic diet.
Trehalose has shown improvements in disorders similar to DRPLA. See article. By copy and paste the below link.

http://db.tt/wIKxPTeY

First swallow

Today Reggie swallowed for the first time since his hospitalizations. Using electric stim on his swallowing muscles Ms. heather (OT) and I gave him a couple bites of keto ice cream and water. He swallowed a total of 15 times.

Sleepy

The depakote 750 TID is decreasing his seizures. But he is very sleepy. I gave him tulsi green tea in his feed today and he really perked up. He did really well in therapy today.

Cough.

Reggie has recovered from his fundal ligation surgery, but the problem isn't 100% resolved. Although he doesn't seem to be refluxing on food, his cough is aggravated by feeding. He is coughing a lot on his drool. Feedings can increase oral secretions. Robinol does work to dry secretions, but it also seems to make secretions worse when he isn't taking it.
The plan is (1) to decrease the volume of feedings and give over 5 times per day. (2) give Robinol first thing in the morning. (3) make follow up appointments with GI and ENT. (4) do some swallow therapy.