Wednesday, January 28, 2009

Neuro appt!

Well we had our first appointment with the neurologist since Jude's hospital stay. The neurologist was nice, but his bedside manner can use some work. I say that with the understanding that he has a very thick accent, and is "medical". From what I hear though he is one of the best around so I was still pleased. Jude's BP was good, weight was good, His head grew about 2cm since December, his fontanel felt good, and he is 27 inches long. The doctor decided to have us hold off on the Klonnopin, and up his topamax. He is now referring to the topamax as a "reasonable amount" vs a "small amount". He seemed encouraged that Jude's seizures are down to two a day, and we are hoping to cut them even further. I told the doctor that Jude rolled over once, and even smiled again the other day. His answer is always a dry "good good", and then he continues reading his notes. I sometimes get the feeling that he believes that due to Jude's issues he just "is". Does that make sense? He is what he is, and he doesn't expect much. I am sure that is not the case, but that is how I feel. We then talked about the fact I had a complete blood profile done last week, and the Dr did perk up at that information. He said he thought it could be beneficial. I also told him that I found out I have several relatives with the factor v leiden issue. He did acknowledge right away that can cause issues in pregnancy with the fetus. On the other hand though he also acknowledges that it really doesn't matter what caused this issue because it's already here. Then he said he understands that we would want to make sure it was nothing genetic, or nothing that would cause an additional stroke in Jude or I. Another consideration is if I do have that issue Emily may as well, and she needs to know for her future.. We then talked about the brain bleed or stroke. The doctor said normally if there is a genetic problem like the factor issue he doesn't see a bilateral stroke or bleed. I told him I knew several women on my boards that had the deficiency and had children with bilateral strokes.......but I am not sure he heard me. He said Jude has a bunch of "little problems throughout the brain which signifies a migration problem". I then asked him if the "migration problem" was caused by the stroke itself because that was my initial understanding. He said he "is not sure if the bleed caused the migration problem, or the migration problem caused the bleed". So now I am VERY confused! I was told from the neurosurgeon and the MRI specialist that the stroke at a very young age caused the brain to not form correctly, and thus caused the issues. He still maintains there is just nothing that could have been done about any of this unless it turns out there was an underlying blood issue that I didn't know about. He did seem a bit concerned about Jude's problem with not going to the bathroom. Although he did acknowledge that he does not think his GI tract portion of his brain was affected in anyway. He said if it was eating, and emptying would have been a problem from the start. So therefore he thinks this is an issue with the medication, and wants us to talk to the pediatrician. He also seemed very happy that Jude is eating baby food so well. I told him that Jude seems to prefer the food over the formula sometimes, and without any hesitation he said, "then give it to him!"
Anyway, so I will stop rambling. So he sent us on our way with new prescriptions for the topamax, a prescription for therapy at cooks (that we asked for), an appointment with him 4 months from now, and more questions. HA HA HA! No, actually the appointment was good, but do you guys sometimes leave a little more confused each time you go into a doctor? He is a nice guy so don't get me wrong, and he is helping my child. I just get....frustrated.


Mara said...

I think sometimes Doctors arent sure of some situations themselves and dont want to sound like they dont know what they are talking about. I think that if they dont set high standards then everything they do is a huge acomplishment. You on the other hand set high goals for Jude to achieve. And I think he will amaze you by reaching those goals. Someone told me once, not to treat Kayden different than I would my other child and to start setting goals for her. Even though she is behind, she will still meet those goals and Jude will too !

Vera Spinks said...

I have been following your blog for several weeks now. You have a beautiful family and I am amazed at the care your hubby gives Jude. I am the mother of twin girls. My girls are seven years old. They were born at 26 weeks and Kylie had a intravintricular hemorage. Grade IV on left and a grade II on the right the dead tissue has formed a porencyphalic cyst. Basicly a large cavity in the brain. She has cerebral palsy and some of the other complications of the brain bleeds are hydrocephalus, seizures, optic nerve damage, and feeding complications. She has a feeding tube but is eating by mouth now and learning how to take liquid by mouth. She did not require a feeding tube until just before her second birthday. She just gradually stopped sucking so we had to do something to get her nurishment. She had her first seizure two months after her second birthday. Her smiles are amazing and her eyes are full of life. I guess my point of contacting you is that one of the seizures that Kylie has involves her screaming. It is a scream as if she is terrified at what she is seeing and screams in horror when I touch her during the seizure. She most recently started to have absence seizures. I read about these cries that Jude has when he is seizing. I have never been able to find anyone that described anything close to what Kylie does. I am just curious about these screams. They baffle me.
As for the post today. We went for a second opinion from another neuro because her neurosurgeon suggested we get another opinion after her last EEG. She is having continuous seizure activity showing on the EEG. Her current neuro told us that if we ever were to get a second opinion that the dr would probably suggest surgery to disconect part of the brain causing seizure activity but he would not suggest we do this. He however offered no solution and did not up or add new meds. He has done a great job with her for years now and I just trusted his opinion. When her neurosurgeon showed so much concern I reluctantly agreed to a second opinion. Guess what we were told at the new consult? New neuro suggested surgery but wants to do more extensive testing and a new MRI. This is not scheduled until March so I am just trying to wait and consider things after the results from 48 hr video EEG and MRI. We expect to get clear and accurate forms of treatment for our children but more times than not we leave even more clueless than when we went in. I think I will go for a third opinion. Two different forms of treatment for the same medical condition from two different drs is just hard to wrap my mind around. How am I to decide who is right. At the appt with the new neuro I went in with a page of questions and left with more questions than I went in with and very few answers. I just wanted to share instead of just reading. Enjoy those smiles from Jude.

Vera Spinks
my email is
Tuscaloosa, Alabama

jocalyn said...

Hey Jenn!
I finally joined the Blog band-wagon...and now I can leave you messages! Anyway, glad the appointment went well. 2 cm is A LOT!! I can't wait to see all the other ways baby Jude surprises those Dr.'s. You're a great Mommy.

~The~Wacky~Whittons~ said...

Dont you love the doctors who just dont seem interested? I dont know what else to say, was there a second doctor you were going to see for his neuro appt?? Or was that a different one???