Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, June 20, 2012

Neurology Follow Up

Meagan had her follow up today with her Neurologist.  Dr. F was happy to see her.  He went over Meagan's records, scans, and gave her a quick physical exam.  He told us the following:

1. Meagan seems to be progressing well in her own time.  She still has quite a bit of work on her head control, but he was happy to see her stronger.  He said she is low tone, which is so confusing to me because Meagan seems to have almost spastic movements at times, so I don't know how they assign the tone quality.  I think I'm going to ask her PT again tomorrow to explain it better to me because it surely is confusing! He was insistent that she start OT and Speech therapies at this point.  He said if Babies Can't Wait cannot fit her in within the next month, he wants us to call and they will write a perscription so we can submit it to our private insurance.

2. He was very happy we have seen no seizures recently.  He is happy with her dose of Keppra - and she didn't gain that much weight. (She is only 14 pounds at 9 mos old).  So he said there is no need to increase the dose at this time.  He said when she reaches around 18 pounds, or if we see seizures again, whichever happens first, to call and they will up her dose. I was concerned about some stomach tensing Meagan has been doing lately, but it hasn't progressed into anything else more serious, so we are just going to still watch that.   Dr. F wants her to have another EEG sometime this Fall to keep an eye on her brain wave activity and see if anything else is going on.  He said we can schedule that at her next appointment, unless we see seizures pop up again, or have more concerns about her stomach spasms.

3. Dr. F went over Meagan's latest scans with us.  He said that overall, the brain growth looks good.  Her ventricles look smaller and he said, of course, that is a great sign the shunt is working properly.  He did say the shape of her ventricles looks rather strange, but he won't be able to tell if that has any implications until we give her brain more time.  He also said he does notice some, in his words, "funky things" in the front of Meagan's brain.  He said it is difficult for him to elaborate on any malformations at this time, and again, wants to do an MRI later this year to get a better look and see what kind of malformations are really present.

4. Head circumference - Meagan's head measured 41cm today.  It has measured 44cm, and then 43cm.  One would think a shrinking head is a good thing, but, actually it is not necessarily the case.  Of course we want the fluid leaving Meagan's brain and kept out from putting pressure on her brain tissue... BUT.... we also want her to have "normal" head growth, for her.  A normal child's head grows "x" amount of cm per month.... we would want Meagan's to grow as well, even though it starts larger than a normal size head.  The fact that it has not only stayed the same, but, gotten smaller, probably means her sutures are overlapping even more and possibly have started to fuse.  It also means there is not enough brain growth to push the bones outward and keep them from touching.  While she has had good brain growth, it has not been enough to keep those sutures from overlapping.  This is something Dr. F said we will go over with Dr. R at her next Neurosurgery appointment.  She is due for a 3D reconstruction scan then anyway, so being he is the surgeon, he will be the best one to talk to us about what course of action, if any, is needed to restructure her skull so it does not impede more brain growth in the future.

So, in short, the good things were:
- weight gain
- no seizures
- brain growth
- smiling, cooing, eating, sleeping progress
- gaining strength in her neck
- smaller ventricles

The things we watch are:
- old seizures recurring, or new seizure types
- weight gain (for new med doses)
- physical progress with therapies
- ventricle shape and size
- possible malformations at the front of her brain
- crowding of her posterior fossa
- synostosis of her sutures

All in all it was a great appointment.  We got a lot of information, and Dr. F, once again, took the time to go over everything we asked.  We are excited to see him again in 3 months and hopefully show him how well Meagan is still doing.  She certainly gave him her share of smiles today! :)

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