It's been quite a busy few days for Miss Meagan! She saw her new Neurologist yesterday. We liked Dr. Z at the old practice - his bedside manner was great and he treated Meagan with respect... BUT... since he was only a "fill-in" doctor, he didn't have direct control over a lot of things we may need done with Meagan (EEG orders, prescription refills..etc.) and since he was just out of retirement to practice again, he is quite a bit older - and we'd like to have a doctor that not only has control over all aspects of the practice, but who will also probably be able to follow Meagan for quite some time and really get to know her.
I asked around and a student of mine has a mom who is a doctor - she recommended a Neuro named Dr. B. Then, Brian came home from work and found out a coworker of his has a Downs child who struggled with seizures and was monitored by a Neuro named Dr. F. Both my student's mom and Brian's coworker were very happy with the Neuros they recommended and so I decided to look them up. To my surprise, and my delight, I found out both were with the practice we had left, but that they had also left and branched off into their own practice! Then it clicked that Dr. F was always the one who had read Meagn's EEG reports, but we had just never met with him in person. I had heard good things about him from other Hydro families as well - it was more of a dislike of the practice and how it ran that was not a good thing. I also saw on their website that the one CNP who we had really liked had gone with them! Excellent! So now that I knew who the doctors were, had heard good things about them, and saw they were off in their own practice seperate from the old one, I had a good feeling. I called to make an appointment, and yesterday was the day!
We arrived early and handed over all our paperwork and Meagan's "book" (her medical file). They scanned everything in and a nurse soon came out to call us back. We went back and Meagan was weighed and measured. Her head circumference is still 44cm .... her length is still 25 1/2 inches. .... but she gained a POUND! A whole pound since last month - this is great news for 2 reasons... #1. I was so glad she gained some weight since she has been struggling with that... and #2. I felt so much better that her pop up seizures were simply due to lack of correct medication dose since she had gained weight.
He went through Meagan's entire file with us - from her birth until now. He asked if we'd been over her latest scans... I said yes, but not in as much detail as I like. He chuckled and said ok.... Dr. F started to go through her scan with us....He did say he was concerned he didn't see much brain growth from her November scan to her February scan - he said things could still change, but, it's something to watch. He said every kid "fluffs" brain tissue differently, so we'll see what her July scan shows. He also said her Corpus Collasum is extremely thin and small - he said probably due to all the pressure...but he can see it. He said in her initial scans it almost looked like an HPE scan (where the CC is missing) but in her Feb scan he can see it, it is just super thin and bowed. (again, due to the pressure). He said that he sees a few other things that may be of concern in her brain matter - but, he said he wont' give us "names" or "diagnoses" because things can change around so much, he doesn't want to confuse us, or say something and later it actually isn't what he thought. He said unless something shows up very clearly, he probably will show restrain in giving Meagan other "diagnoses" until she's closer to 2 years old and a scan can reveal a lot more.
He really didn't tell me anything I "didn't know".... but it was more just going over what we'd had done in the past, and explaining to us in more detail what the scans meant, since our NSG tends to be more conservative and not share as much info (he doens't like to worry us). He's great and will answer any questions, but often times I think of the questions later so it was nice to have the 'in depth' discussion.
Dr. F kept looking at Meagan's birth scans and pictures and was just so happy with how far she's come. He couldn't believe he was looking at the same baby that had the scan he was looking at. He noticed her muscle tone was pretty tight, which is ok for now - hopefully we'll get a lot out of her at PT..etc. We just have to make sure it doesn't continue to tighten and become spastic. He said if we can keep those seizures at bay, he hopes she will continue to make good strides. He was loving her little smile and talked to her quite a bit.
He said to start Meagan on her new dose of medicine that night, and hopefully we'd see her seizures go away again after her body adjusted. I was so glad she'd gained weight. She responded so well to the Keppra, that I think this new dose will do the trick again and we'll be back in business. He said to come back in 2 months and he'd love to re-check her development and talk about the plan from there. She is scheduled for another scan in July to check on her skull sutures and if they have fused or not, so we'll find out more on that this summer.
ALl in all it was a great visit - Dr. F was extremely attentive, answered all questions we had, took his time with us, and was very loving and engaged with Meagan. I think we are in a good place right now with a Neuro (FINALLY). He seemed very on top of things, and told us if there were any issues with her meds getting changed, to please call him right away. He also said if we noticed any other kinds of strange movements or seizures start, to please call right away so they can check her out.
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Fast forward to this morning, Meagan had PT... she was a bit "drugged" because of her new dose of meds... but she was happy and NOT sleeping like she was when they'd up her Phenobarb. (I'm so glad I got her off that stuff). SHe was lazy though!! She wouldn't roll, and was not interested in toys. After working with her for a bit, her PT decided to put her on the ball. Meagan did really well actually because she was kind subdued, so she let her work with her. There were a few seconds where Meagan would keep her head a few centimeters off the ball if Miss Susan (the PT) held her arms, so that was exciting. She did a few more trunk exercises and some rolling exercises and then she let Meagan rest because she was obviously so out of it.
Overall, it's been a "good" week of appointments and therapy. I feel like Meagan is being well taken care of and I'm glad we seem to have her core team of doctors in place. Now we wait until next week when her glasses should be in - I can't wait to post pics of her in them. A sweet baby in cute pink glasses - who couldn't love that!? :)
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