Today started off on a bad note as does this post. Michael woke up feeling under the weather so he went to sleep in the other room so he wouldn't get Bug or I sick. Then when we woke Bug up to get ready for her doctor appointment with Dr. Coleman she had a seizure. Doesn't get much worse.
If you don't already know, our pediatric neurologist is Dr. Coleman, his office is located in the Baptist Medical Building in OKC.
Dr. Coleman said that since she is continuing to have seizures but responding to the Phenobarbital he would like to up her dose to 12ml. He wants us to give her 6ml twice daily rather than the full 12ml at night. So tonight we will give her 12ml to make up for the missing lapse that we'll encounter when switching to 6ml twice a day.
We got an explanation for why she had such a major breakthrough while on Phenobarb if he believes this medicine is the right one for her. He said that Phenobarb is an anti-convulsant medication that goes in to fix the root of the problem, often after a patient has been taking it routinely for a long period of time the body may recognize the Phenobarb as a threat and in a sense, attack itself to compensate for the work the Phenobarb has been doing.
He did his routine check of hearing, tracking and visual interest and she passed all with flying colors! We'll see SoonerCare next week to do a developmental assessment on her. Phenobarb has a nasty side effect of slowing brain development and we have noticed it in a few things like reaching and playing with her mirror image.
Dr. Coleman put in the order for her to get a second EEG done in the next couple of weeks. It is normal for a pediatric neurologist to get multiple EEGs because their brains can change, their seizures can change and the brain activity when not in a seizure can change. Rayleigh's last EEG was completely normal which means that her brain acts as any other infant's does when not having a seizure. As much as we do not want our baby to seize, if she does have a seizure during the EEG it helps Dr. Coleman determine what kind of seizure along with where in the brain it is happening.
He also had us go over to the lab and get some blood drawn to do DNA and chromosomal tests to possibly find a reason for her seizures. We'll get the results on the chromosomal analysis within the next couple of weeks and the DNA test will take longer.
The statistics say that 2 out of 3 children with epilepsy outgrow them in their adolescence, Dr. Coleman believes that Rayleigh is still within that statistic because all of her tests are coming back normal and she is responding well to the Phenobarb even with the need to up the dose.
At this point, all we can do is get those seizures under control and do the tests Dr. Coleman wants done to get more answers. Frankly, we hope these DNA and chromosomal analysis come back normal and don't show anything about why she's having seizures so that we're still dealing with something benign.
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