Wednesday, February 2, 2011

Abby update.

Hey all.

Still not exactly sure what is going on and my head is spinning. I am so worked up my muscles are aching and my head is pounding.

Called the Neuro to tell him of the seizure the next am and he put her on a med without even seeing her. I protested and he gave me the due to her having Rett Syndrome speech then said Thank you Maam and was gone.

I haven't gone and picked up the med. First because I don't want to and second because our town is under a weather emergency and it is impossible to get out. My husband was stuck at his job for 3 days.

Yesterday she seemed fine but a little wobbly. Last night when I was bathing her she started to retch and vomit. After I got her out of the tub she was very anxious and lethargic. She clung to me and I had to cradle her tight against me. If I let up on my grip at all she would start to cry.

When we went to bed she started to retch and throw up 5 minutes into her feed. Even though she gets half of her days nutrition and hydration at night I decided to turn off the feed in hopes it would stop the vomiting. It did.

Abby sleeps with her arms crossed across her chest. I slipped my hand under her arms so I could feel her breath or feel her if she started to shake. Her grip was very tight.

At this point I don't know if she had the seizure because she was getting ill or if the illness is the after effects of having the seizure. I tried to call 2 of her doctors today to demand she be seen and we discuss all possibilities and side effects but both offices were closed due to weather.

I am hoping to be able to get her in tomorrow or at least before the weekend. I just cant start her on an every day epilepsy med over one seizure. I am very well aware that seizures are a part of Rett Syndrome but most girls have them by 3 or 4 and she is 6. I have had numerous parents tell me that their daughters don't have seizures unless they have the flu or a fever. Several have also reported only one ever. I just think we should wait,have an emergency med on hand and see what happens.

I am concerned about the extreme nausea and anxiety that she gets when she is nauseous. I would think there is something we could give her for those times besides benedryl...which hasn't been working.

Any advice would be appreciated.


1 comment:

Tuška said...

Terri, and what about her EEG? Is there any epileptic activity? I don´t understand why the doctor put Abby on med without seeing her and doing EEG. That seems to me very strange.

My daughter (5 years in March)has epilepsy (since her second year), "just" small seizures, she is on 3 meds and isn´t still without seizures :o(
If I were you I´d wait as well. You´ll see what will happen.

I have no advice, unfortunatly.
Sorry for my English.