Life After NICU

A Quick Update From Neurology

We finally saw James’ new neurologist. Not impressed with the ability of his former doctors to make a referral, but like Pete would say, “It’s all good.”

James has had several seizures since our move. This has followed the same pattern we’ve seen since he began having seizures back in April. At first his medication works, seizures stop, all is good. About three weeks later seizures start again. Medication is increased, seizures stop, all is good. Repeat. Repeat. Repeat. He’s had several increases in meds, and still we’re chasing seizures. According to his doctor, this is a common problem with the medication James is on. His body adjusts after a few weeks and begins to metabolize the medication faster, so the increased dose is no longer effective.

His new doctor never uses this particular medication. He doesn’t like it because it has too many drug interactions and too many side effects. He only has two patients on it, and it’s because they came to him already on it and don’t want to change. His old neurologist always tries this medication first, and likes it because its been around forever, has minimal side effects, and is easiest on his body. Confusing. I think it must come down to personal preference. Whatever the case, James is beginning the transition to a new medication. Hopefully seizures will be back in control within a week or two. If they aren’t, he has a plan in place for that as well.

Happy JamesOur discussions with the neurologist didn’t end at seizures. He’s a little concerned about James’ weight for height percentile. He understands that it’s much improved, but would like it a little higher. He wants us to use the g-tube if needed, and not be in a hurry to get it taken out. We were hoping it would come out after a healthy winter at school, but that would not be his recommendation at this point. Back to adding calories everywhere we can, and watching the scale for weight gain.

The most unexpected discussion had to do with James’ toe-walking. It caught me off-guard. We didn’t even mention it because everyone we’ve addressed it with has said it’s fine, he’ll out grow it, all kids walk on their toes. Those statements, while true for many children, do not continue to be true when a child is 4 years old, still walking on their toes, and losing range of motion. I’m not sure I’m on board with the treatment he wants us to think about – Botox injections and serial casting – but I’m interested in exploring treatment options. I’m definitely interested in doing something now that will limit the effects of toe-walking later in life.

He’s a ‘big picture’ doctor, and I like that. He spent well over an hour talking with us and answering all of our questions. He was sweet as can be with James and mentioned lots of things that are really good with his development. I think we’ve found that match you’re always hoping for with a doctor, and we’re moving in right direction.

3 thoughts on “A Quick Update From Neurology

  1. If you don’t mind me asking- what sort of seizures is your son having? When did they start? My 30 weeker just started eye rolling. He’s getting an EEG later today and we see the neurologist Friday. He is two years old. Thanks,

    • James has partial complex seizures. He has tremors and his left arm stiffness during some, and stares and is unresponsive during others. They are both very short, lasting 10-20 seconds. He’s had three EEG’s – 2 were normal and 1 was abnormal.

      I hope you get good information and some answers today. And I really hope you have a good neurologist – it makes all the difference!

  2. Pingback: Food, It’s What’s For Dinner, and It’s (Going To Be) Real | 22w6d

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