Neurology 101

We saw Jack's neurologist last week to discuss the MRI he had done at the end of October. We discussed the different areas of Jack's brain that were affected by his grade 4 bleed. I really like our new neuro. He was drawing diagrams, breaking out his full color pictures of the human brain and very interested in answering my questions.

First question (and the main reason for the MRI) was to take a look at Jack's Corpus Callosum. As explained before, Jack was suspected to have Complete Agenesis of the Corpus Callosum (meaning the structure that connects the two hemispheres of the brain is missing). However, the MRI reveled a different finding. Jack's Corpus Callosum is formed normally in the front (anterior) and is thin (hypoplastic) in the back part (posterior.) So, this changes things on paper but doesn't really affect us in any other way. So a new diagnosis would be Hypoplasia of the Posterior Corpus Callosum. This was most likely due to the trauma of being born at 25 weeks.

We discussed his PVL (damage due to grade 4 bleed), ventricles, and other areas as well. There isn't anything new or changing and I didn't see or learn anything I haven't before. I appreciated the time he took to answer my questions. Not all doctors are willing to do this.

We talked about Jack's spasticity. He disagrees with the use of Botox in several locations at once. I repect his opinion, but we are still going forward with the injections at CHOP in February. We discussed surgical options like the SDR or the baclofen pump. Both are neurosurgery and luckily we are VERY familiar with our neurosurgeon. This was just a discussion -- we are in no way ready to put Jack through major surgery at this time. We will keep our minds open and continue to ask and discuss everything with our specialists.

Jack has an EEG scheduled for December 7th. If there are any willing participants I sure could use a hand at this appointment! These tests bother Jack so much and he needs restrained. I am hoping daddy can come with us especially because I do have to watch how much I do physically. Jack's medication levels look good so we did not increase his Tegretol at this time. He's also been seizure free so we're doing well at the moment. The neuro told me to call about 3 days after the EEG to discuss the findings. At this time we will increase meds if indicated on the EEG or we will wait until we have our 4 month follow up.

Yesterday I took Jack to get casted for a new pair of DAFO braces. I could not believe how BIG the casts looked!!! Jack picked dinosaurs...again....but this time I chose green padding and strapping instead of blue. He was also measured for a hand brace as well. Those only come in gray...we should be picking everything up in about two weeks.

This afternoon we have our 6 week follow up with the eye doctor. 6 weeks ago the doctor decided to give Jack a break from his glasses to avoid over-correcting his eye muscles because they were in a pretty good position at the time. I feel Jack will be in glasses again perhaps just not as strong of a Rx.

Is everyone ready for Thanksgiving? We are celebrating at home, just the three of us. Then we may go visiting or have visitors...it's all fine with me! I am totally flexible.

11 Weeks, 1 Day

Maternal Fetal Medicine

I met with Dr. B. today for what was a very informative meeting. I really like his manner of speaking. He has a very difficult job, one that I would not want, but am sure glad we are blessed with people like him on this planet.

We discussed a relatively new type of therapy for preterm labor. It's called 17-P. When he started talking about the injection, I became excited and hopeful. There were studies showing a decrease in preterm labor and delivery with 17-P injection therapy. But I knew there would be the other side of the coin. I listened carefully and then learned that the FDA has yet to approve 17-P. This blurb from Wikipedia explains and sums up the risks involved.

The application of 17OHP has been shown to be useful to delay premature labor in pregnancy.

The use of 17-hydroxyprogesterone caproate in pregnancy to prevent preterm birth is not recommended without further study according to two authorities.

A 2006 Cochrane Review concluded "...important maternal and infant outcomes have been poorly reported to date... information regarding the potential harms of progesterone therapy to prevent preterm birth is limited" There was a similar conclusion from a review by Marc Keirse. Three clinical studies of 250mg/week of i.m. 17-hydroxyprogesterone caproate have all shown a trend for an increase in pregnancy loss due to miscarriage compared to placebo.

A meta-analysis by Keirse showed a trend for an increase in miscarriage with 17-hydroxyprogesterone caproate compared to placebo.

There has also been a study in rhesus monkeys where all rhesus fetuses exposed to 1 and 10 times the human dose equivalent of 17-hydroxyprogesterone caproate died in utero. Currently (2006), 17-hydroxyprogesterone caproate is a category D progestin according to the FDA (evidence of fetal harm). There is speculation that the castor oil in the 17-hydroxyprogesterone caproate formulation may not be beneficial for pregnancy.

So, while it's wonderful to know we're on the brink of helping prevent preterm labor and delivery, I am not ready at this time to deal with the risks of 17-P.

We discussed his opinion of my chances of another preterm delivery and he put me at 16-23% based on my history and medical records. This is good news because I truly thought the chances were much, much higher.

We discussed stress management, both physically and mentally. This is something we've been working on at home for the last few months. One small example of something we can control is having Jason take the dirty laundry downstairs. That saves me strain of carrying the HUGE, OVERFLOWING basket...also, Jack is taking the bus to school now which cuts out a lot of carrying and lifting...although I do still carry him on the bus and into his seat. We talked about lifting properly and not bearing down or straining when lifting...rather, use my legs. I am sure I could even ask Jack's physical therapist on some ways to help ease the strain while lifting and carrying our ever growing little man! As for the mental stress I am taking it as easy as possible. Stress is NOT good for the baby. In fact, stress hormones are directly related to premature labor! I am trying really hard to relax.

I go back in 4 weeks' time which by then I will be 15 weeks pregnant! We will do the quad screening (genetics) at this time and also an ultrasound.

We will start measuring my cervix and tracking any changes at 18 weeks. I believe he mentioned this would be done weekly for several weeks.

We discussed the need for a repeat c-section due to the fact that Jack was taken via a classical incision which an up and down cut on the uterus. This is less stable and can lead to uterine rupture if the pregnancy goes all the way to 40 weeks. This could be fatal for me and the baby. So we'll do a fetal lung maturity test beginning at 37 weeks and as soon as the lungs are ready we'll schedule the section.

I really feel I am getting good care. It helps to ease my mind and I am doing a good job of enjoying being pregnant! We are very excited and happy. And YES as soon as they can tell I WILL know what we're having!!!!

9 Weeks Old Today!

From baby-gaga.com :

Fetal development in pregnancy week 9:

Voila! Your amazing growing baby has now been accepted into to the fetus-club, a very exclusive and exiting new stage in their prenatal development. Basically, this means the little sweet pea has graduated from swimming embryo creature to a recognizable human being! This week in particular, the irises of their little eyes can function, but (frustratingly for them?) their eyelids remain fused shut for a while yet. The external ears are formed, and their inner ears are now filled with fluid—so your little one actually has started to develop their sense of balance. Your baby's little swimmer legs are still relatively short, although other developments are going forward at a nice pace: their kidney is actually functioning now, which means they’ve started urinating.

Photo Courtesy of brillbaby.com

I feel HUGE already! I've been wearing elastic waiste pants and maternity tops already. I met with a nurse at HMC last week. She was very nice and informative. I had labs done as well. I will be a high risk patient at Maternal Fetal Medicince and will be monitored very closely.

Next week (at 10 weeks) I meet with Dr. T. at HMC. This will be my last appointment before I move over to MFM. The nurse said there would most likely be a quick bedside ultrasound done at this visit! Oh, I hope so...we love our pictures in this family! LOL

I am under the weather a bit and have an appointment with my family doctor tomorrow morning. I believe I caught whatever virus Jack has at the moment. He saw his dr. yesterday and found out he has an ear infection! Poor guy.

Well, must go get Jack ready for school!