ACTH for real

Her smile lights up a room!!
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Hi - sorry to be behind on my updates. Not sure where the last two weeks have gone.
Well, I think I told you that the seizures came back. We had an outpatient Telemetry (EEG w/ Video) for 4 hours on September 30th. The seizures started out pretty mild but continued to get worse each day so our Dr.upped her zonegran dose to 125mg a day and got us scheduled for an overnight hospital stay.

We started the ACTH treatment a few weeks ago, on October 2nd. They only kept us in the hospital overnight because they had to teach us how to do the injections and then monitor her closely to see if she had an alergic reaction or other problems. This drug has a lot of potential side-effects (see an earlier post). The main one is wieght gain and cronic irritability.

Things are going OK. Marleigh is doing well on the drug, her blood pressure and blood sugar are a little high but within allowable amounts. Keith and I have managed to do the injections everymorning - it is a team effort, with one of us holding her still while the other administers the shot in her leg. We alternate legs each day. At first Marleigh screamed, but now she takes it like a champ.


The day we checked into the hospital my brother, Brent just happened to be in town! I haven't seen him for more than a year. Usually we have a family reunion on July 4th in the UP but this year I gave birth on July 1st and his wife gave birth on August 13th. So needless to say, it was so wonderful to see him! He had to come to the hospital for dinner - but it was actually pretty good...one of the IN&OUT burger places is next door to the hospital. I love those burgers ;)

Anyway, we had a follow-up Dr. Apt. on Monday and it sounds like we'll be doing another outpatient EEG/Telemetry. This is because Dr. Kornblum (neurologist) needs to know how effective the ACTH is. Marleigh has been doing a strange breathing thing (kind of like when you can't catch your breath after you have been sobbing) only it happens all the time. The Dr. is concerned that it is a sign that her brain activity is still abnormal. After this test we'll know more about the plan for the next couple of months.