Tuesday, May 08, 2007


Because my Mommy-heart was having problems with the doctor's diagnosis of seizures after the (quite experienced) EEG tech told me that she didn't see anything concerning, I decided to seek a second opinion regarding William's seizures. (Not to mention the prodding I got from all your comments... thank you!)

This second Neurologist (Dr. Hippie from the NICU) said that she does NOT think that he is having seizures. She said his EEG was abnormal but that is to be expected with the scarring that is evident in brain based on the MRI. She wants us to take him off the phenobarbital.... hooray!!! The doctor did say that with his type of damage and location of brain scarring, she does expect that he will have partial seizures down the road, age 2-3. We will cross that bridge when and if we get to it.

None of our Neurology appointments, however, are purely good news or really even mediocre news. This one was no exception, unfortunately. I did get to review William's MRI with the doctor while we were there. No super big surprises, I guess. Bilateral diffuse PVL with ventricle enlargement (right side much worse than left). Moderate amounts of brain scarring (left worse than right, ironically). Thinning of the corpus collosum (kind of goes hand in hand with the PVL). And the worst news, cerebral atrophy. The doc says this isn't terrible, necessarily, and that even a term infant's brain isn't fully developed at this stage. She checked William's reflexes and found that his reflexes were not "horrible" and noted that he was tight through his legs but even tighter in the arms. When she put him on his tummy, he held his head high and then promptly rolled over... I was so proud! William did keep his hands fisted the entire visit but this is unusual for him. I think he did it because the doctor was just messing with him so much.

At almost 3 months adjusted, developmentally, William still seems to be doing okay. I wish his head control was better but he is swiping at his toys very well now when he is on his back. I think he will soon grab one! Because his arms are so tight, he has trouble getting his hands in his mouth but, WOW, he wants to do it so much! I think if I can keep him looser like how the Neuro stretched him out, he will finally be able to eat his hands.

But, best of all, William is now cooing. He has one "word" that he loves to use and really likes to "converse" with me. He says "AhOwww" and then I'll say it and then he will repeat with a big smile. He seems to have a great time doing this over and over and over again. I know I enjoy it.

Dr. Hippie told me that she has a "handicapped" child. I had been told this by someone else but would have never dared to ask her about it. I would love to talk to her about her experiences raising her son, finding therapists, dealing with school issues, having a career, etc. But I feel I need to wait before I get too personal with her. Our relationship is likely to be a long one; I've got plenty of time.

There is so much going on in my life right now I would love to blog about but I am having trouble finding time. It is the end of our insurance year June 30 so we are packing in as many appointments as possible. Very time consuming.


Jennifer said...


I'm so glad he'll avoid the medication for now. I had a pretty useless neuro when I had a seizure at age 20. She put me on all sorts of meds and I was a zombie - couldn't drive, couldn't sleep. We never found one that worked for me and then found my seizures weren't 'brain originating' or seizures at all (I was actually in cardiac arrest, not that thats any better). But I have new found respect for anyone who rides the 'find the right seizure medication' rollercoaster!

You're doing such a great job by your kids!

I meant to ask how Margaret did with her tubes? Arianna is getting tubes but with her history of ear infections and sinus infections I doubt it will be a long term fix (adenoids seem more likely at this point), but her hearing/speech are affected by the fluid trapped in her ears so I think its a good first step.

Jacqui said...

That's great that you got a second opinion. i hate the idea of drugs for Moo.

It's interesting that your doc referred to her own child as handicapped. it's a term that I don't use. If I have to, i will say he has special needs or if pressed, stutter "disabled".

Hope the remainder of your appointments go well.

Jennifer said...

OMG Lisa, that video of William is adorable! I miss the little baby noises that Ari used to make.

Thanks for the reminder - gave me a great smile!

Nancy Brown said...

I was wondering how the Optho appointment went... Holler my way when you get chance

Lisa said...

Wow....he is such a cutie pie. I love baby laughs. Thanks for the smile today.

Oh, by the way, your (well, Margaret and William's)therapist came by to do Eli's assessment yesterday. Small world, huh? Maybe not that small considering where we live. :)

Misty said...

Lisa! He's beautiful! Aww, I was smiling the whole time watching it..so adorable! I'm glad you seeked a second opinion and will have him off the pheno medicine...I hope you find that you like this dr more..I think you have already! :)

Jessica said...

Awww, what a cutie he is! Thanks for sharing the video. He is precious... And, glad to hear he can go off the pheno. Keep us updated.

Sam said...

he's too cute. About the tightness, David has it also, and they prescribed him baclofen and it seems to work.

Happy Mother's Day!