Sunday, April 29, 2007

Follow-up Follow-up

Why do I feel like shit after every meeting with a Neurologist? Seriously. It feels as though Dr. S has sucked my essence right out of my body. She was a new Neuro for us. Younger than Dr. Hippie from the NICU... probably about my age. She was pretty. She had hair that gets washed more than twice a week; eyes than have slept longer than three hours at a time this year. Her mouth was a black hole that espoused words I knew were coming but never wanted to hear. And then there were the bad surprises.

Things I knew were coming: William is showing spasticity in his legs. They are scissoring and are certainly affected by his brain injury. He is not attending the midline like he should be at his adjusted age and his head control is still not very good. His movements were described as "mirror movements"- his left and right sides move in unison. At this point he should be having more reciprocal movement.

Bad surprises: Dr. S thinks he is having seizures. William breathes very fast and yawns a lot. The doctor thinks that the yawning might actually be a form of seizure. Also, the worst news, William's head is not growing as fast as it should. Absolutely the last thing I wanted to hear. For those who do not know, poor head growth = poor brain growth and a poor prognosis for his cognitive abilities.

Diagnosis (for now): spasticity
Future testing: EEG on May 3, MRI on May 3

Not looking forward to that MRI. It will be his first. I'm not sure I really want to know what it will tell us.

10 comments:

Mel said...

I'm sorry that you were socked with bad new:( I'm really really sorry. I've been there.

I hope the testing goes well and you find out the Dr. is wrong about the seizures.

Amanda said...

I just wanted to let you know that I am sorry and thinking about you daily. I wish I could be to help you out and give you a shoulder to cry on!

I will be praying the test goes well and you finally get some good news!

Reg said...

Thinking of you. I wish I could take all of this pain anyway...

23wktwins'mommy said...

I have been reading your blog for awhile now. I am so sorry to hear about the neuro appointment.
It makes me wonder if I will request one for awhile for my two. Serena's last head ultrasound showed some ecogenesis. Is it a cyst, PVL, or something else? Is it something to worry about or not? (She had a bilateral Grade II bleed that resolved...her brother a Grade I.)
I talked to the NICU Doc before discharge and then to the EI worker, both told me nothing would change in terms of therapy as of now, and that a diagnosis of PVL or a cyst wouldn't tell us anything about her future abilities. So for now we are opting to keep up with EI appointments and keep an eye out, but have opted not to have her, or her brother who was actually the sicker of the two, get an MRI yet.
Since you are going through it right now, what do you think? I know obviously the news of possible seizures has to be followed up, but in terms of your experience, other than the seizure discovery, do you think there is a real benefit to following up with neurology?
Should I be aggressive in asking for referrals? (none were suggested by NICU or their pedi.)
Thanks for your advice, and I hope William continues to make strides (Your previous post talked a lot about the things he was doing well with...especially thumb sucking...way to go William!!!)

Jessica said...

Lisa~
Sorry to hear about your appointment. I am thinking of you and hoping you get some better news in May. Hang in there and keep focusing on the positive!
You are in my prayers...

Vicki said...

LISA,
My prayers are with you and Dave during this difficult time. Take joy in each minute with the babies no matter what. Try to stay in the minute and not second guess what is going to happen. Much love

tiffany said...

I wish you didn't have to go through this. I wish so much we could give you a big hug. I am hoping better news will be just around the corner.

Jessica said...

Good luck with everything today....

Jennifer said...

I'm thinking of you today Lisa. I am praying for peace for all of you...

Nancy Brown said...

AWW.. I remember thinking I can't go to any more doctor appointments. If I do I will get bad news at every single one. It happened for MONTHS. I hope it goes well. I am adding you to my blog list if that is ok!!

Do you have vison services yet? And where do you live?