Have I mentioned that doctor's offices can at times drive me legally insane? I actually love our neurologist, but talking to the assistants can sometimes leave me frazzled. First off we left a message yesterday about Jude's issues, but never heard back. Therefore, I called again this morning, and then sent the following email:
"I left you a message regarding Jude Ortiz. We are concerned, and would like to talk to someone about him. We are unsure if he is having a reaction to the Valporic Acid, or if this is normal. His cheeks have been on and off flushed, on and off warm to the touch, he has very limited eating ,but at the time is still taking between 4-6 ounces every 5 hours (no solids), he keeps rolling his tongue, his spasms have greatly increased (especially when eating), and he is sleepy.
"This is the reply I got:" ok my oncall DR. said she thinks you should take the baby to his pedi doctor it sounds like it is not seizures related ." (This was copy pasted by the way).
Anyway, I emailed her back:"We went to the pediatrician yesterday who said Jude looked perfect except for the spasms. Therefore this should be an issue with SEIZURE ACTIVITY. Also, this is exactly what landed Jude in the hospital before for a week, which makes me wonder if you even pulled the file"
I have yet to received a response, but Mike just got a call from the doctor himself (hooray). He said he believes that Jude is growing resistant to the medication, and the seizure activity is keeping him from eating. The effect on a baby's brain from seizures can be detrimental to normal everyday activities. Therefore, they are increasing his meds, and we are watching him. We have instructions that if Jude continues to refuse food we need to bring him into the hospital. At least the doctor doesn't think this is a reaction to Depakene which we know can be dangerous.
Sometimes the challenge of being able to properly determine what is causing issues in Jude can be trying. It's always seems to be a question between normal baby issues, and life threatening problems.
3 comments:
Seriously if I went to school for 8+ years and that is the only email I could muster up, I would request all my money back.
Wow - what an e-mail. Good for you for standing up for yourself and being a strong advocate for your son. I can't even imagine what you must go through on a daily basis.
You are one strong woman.
Hugs
Ugh. Some doctors have the WORST nurses. THE WORST!
Have they considered trying a new medication? seems like you just have to keep upping the dose on this one. Is the doctor giving you any options or does he think this will eventually get a handle on the spasms?
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