Thursday, February 19, 2009

Doctor Doctor

So.... I GOT SLEEP!!! Therefore, I am not as cranky today. Jude had a pretty bad seizure about 10:30, and it really wiped him out. He slept straight until 5:22, and then Mike got up to feed him. So I got a pretty good nights sleep, and I feel like myself again.

I talked to Jude's neurologists office yesterday, and explained my concerns with the medication, and the continuing seizures. She said they believe if Jude is taken off his medications he will seize all the time. I asked, "but Jude has never seized all the time....he has cluster seizures". She said, "I know I told him that, but {pause} this is just what he thinks". The nurse stated that the doctor recommended putting Jude on a medicine called Keppra. I have done some research on it, and everyone I talk to that has a child on that medication raves about it. They stated it's much better than the pheno, and the topamax. The problem is Jude would have to add this medication to his existing meds until he is weaned off the other meds. This seems like A LOT of medication for a 5 month old, but I am encouraged there is another drug that seems less harmful. So after some thought I finally decided that I want another doctor that knows Jude's case inside, and out. A doctor that remembers him like his pediatrician does, and I don't have to remind them what type of seizures he has. So I put a call into Jude's pediatrician, and he recommended Texas Child Neurology center. We had actually visited them before Jude was born, and prior to going to Cooks. We really liked them, but the doctor that was near our house that worked with them left on a medical sabbatical to Africa. That is why we chose Cooks. So I called them yesterday, and talked to a very nice lady who took all our information. I explained Jude's case, and how important it is that we get a second opinion prior to administering more medication. She then told me that the lady that books the appts will be calling me back...........she did with the first available date of 4/13!!! For the first time I just put my foot down, and said that wouldn't work. I told her I would have the pediatrician call to get Jude in sooner. She seemed a little surprised, but said the pediatrician calling should do the trick. So I will let you guys know what happens.

Then last night I started putting together a binder for Jude. I split the binder into categories labeled the following:
1. In utero
2. Pediatrician
3. Neurologist
4. EEG
5. MRI
6. ECI
7. Maternal blood results.
I then put a picture of Jude on the front of the binder to remind the doctor that Jude is a real baby. I am in the midst of gathering all the information I can for my personal records, and for any doctors in the future. I have all of his in utero Mri, and some of the other records, but I want a comprehensive history. Jude's case can be traced from 19 weeks in utero to when he was born and they thought he was fine until now. It is a long case, and maybe it will help them better serve other children too.

So I am on a mission. I want a doctor that knows my son, I want the best possible treatment, and I want someone that listens. I am determined to find this person. In the mean time I may run a truck through my health insurance company, and then on into the IRS but that is a whole different blog for another time.


Bronx Cataldo's said...

Hi All,
Before I would let them give Finnian another seizure med I would always ask could they bring him in and get the EEG hooked up so they could see waht I was seeing at home. They always did and it made me feel better adding on another med. Finnian is on Keppra and I love it I hated pheno because of the side effects it had on him.
Ger,Finnian and the Cats in the Bronx

tara @ kidz said...

Found your blog through Facebook. My daughter also had a stroke in utero and has seizures and developmental delays. So glad to meet someone who understands. I too am glad when I get a good night of sleep!