Search This Blog

Wednesday, August 26, 2009

Overdue update

Another month has gone by and a lot has happened. Meg has been sick for the entire month of August with a throat infection that will not go away. The omnicef started to work and then the puss returned within three days of the last dose. She then had Rocephin shots three days in a row which cleared up the tonsils again - for one week exactly and then it was raging again. We then started cleomycin which once again cleared up the tonsils until the 9th day of treatment(10 total) which was this past Monday. We stopped that one and the Dr. switched her to Ciproflaxin and Diflucan thinking that it is fungal or yeast and/or a very resistant bacteria combo and we should try to get it with these two. Maybe psuedomonas? Commin in kids with trachs. It responds to the antibiotics and then resists it. I hope that we dont have to go inpatient to treat this one. Being sick is a big setback for her. All that rolling has come to a halt. We also started her on a new seizure med - rufinamide which was approved in the U.S. in November of 08 and it just being prescribed to patients this past spring. I have seen less seizures since she has gotten to full strength. I could not count the number in a day anymore and today I have seen about 8. She will have more when her body is fighting and illness too, so maybe it is working better than I see right now. The ketogenic diet is also planned for September still. Pat and I have met with Senator Victor Crist last week to talk about the gaps in health care for Megan and the devastating effects it has on everyone and how Megan deserves the same medical attention that someone who does not have insurance or cant afford insurance gets. Why does she not qualify - it should be a quality of life issue.

Rachelle also left for grad school - we miss her a lot. She became a normal fixture and part of every day around here. Meg sure does love her too. We will be happy to see her when she visits us - RIGHT RACHELLE? WHEN YOU VISIT US???????

Kaela(Rachelle's old roommate) started helping out this past Monday and she is training on all Meg's stuff. So far so good.

Going to go eat dinner right now - blog later.

Article in Tampa Tribune today - will post it in a little while


Colleen said...

So sorry she has been sick! Hoping they can get rid of it and you all stay home. So glad the new seizure med is working so well!

Fawn said...

I hope Megan's infection finally clears up for good very soon!

I found you through a Google Alert about the ketogenic diet. My 3-1/2 year old daughter has been on the diet for 10 months and it has been a miracle for her. I have link on my blog to other families on the diet, too, if you're looking for support.

All the best.

Fawn, Whitehorse, Yukon
Mom to Jade, 3, Doose Syndrome
Keto Kid since October 2008