Thursday, June 24, 2010

Neurology update 6-24

Well, as usual the neurologist made me feel bad by telling me my baby is not doing great, will never be normal, and she doesn't know how bad Sadie will be ultimately (instead of how good Sadie is already doing). If we didn't have so much support, and believe in the power of God to continue to work a miracle in our baby's life, we may have left there feeling totally hopeless. Brian even called her on it and said, "you just said she's doing way better than anyone expected, so why are you telling us she's not doing great?" Whatever Dr. Jarrar says, we know our baby is doing great (because she's alive!!)!

So, she showed us Sadie's EEG and explained to us that Sadie's brain activity is suppressed and we could see that her brain waves weren't as wavy as maybe someone without brain damage. Then she showed us the spikes that she said showed that Sadie has a tendency to have seizures. She said Sadie had a lot of them and she really believed that if we took her off the phenobarb she would have seizures. She said she'd support weaning her off, but explained to us the risk of Sadie having seizures. If Sadie has a big seizure (lasting over an hour) it could really do significant damage and possibly set her way back developmentally. If she has little seizures, but a lot of them, the chemicals released can cause damage. And even if her seizures are limited, sometimes having a seizure can cause more seizures and more seizures snowballing them out of control.

Then Brian asked about the amount we give her and said it seems like the other babies we've heard of get WAY more (we only give sadie 2.5 mL once a day, many of the moms we've talked to were giving 5-7 mL!) So dr. Jarrar looked at how much we're giving her and said it's not even enough to provide a protective barrier against essentially we're giving her medicine that's not doing anything because we're not giving her enough. That made me feel a little better because then maybe such a small dose isn't so detrimental to her development, but it also made me a little annoyed that nobody has LOOKED at this! They ask us EVERYTIME what medications she's on and how much, and EVERY dr. visit, not just the neurologist. (I mean, when she came in she asked me if Sadie was eating orally?! Do you really pay so little attention to your patients that you don't know? We've never seen Dr. Jarrar with a feeding tube.) Anyway...Brian also asked about long term effects of the phenobarb, as well as the keppra (which is what she would be switched to providing she needs to be medicated for seizures) and Dr. Jarrar told us they haven't found any side effects to keppra, but phenobarb has had tests showing it's not good for the brain and can stunt development. Awesome. I asked Dr. Jarrar why we would switch to a new medicine if Sadie wasn't taking enough to protect from seizures anyway and we haven't seen any. She said her concern is that maybe she's having seizures we can't see. I mentioned though that the EEG didn't show seizures and she told me a 45 minute EEG isn't long enough to see something like that. To find out, Sadie'd have to be admitted to the epilepsy center for a 24 hour EEG. In the end what we decided was to do this, the 24 hour EEG, and if we don't see any seizure activity, we'll taper off the meds completely, but if we do see seizures we'll start the keppra. And until we do this study we'll keep Sadie on the phenobarb. When i asked why she said it's probably helping her was all i could do to not laugh in her face! Ha! HELPING her sleep...she's probably right though, i just can't imagine sleep being WORSE!!

And I'm okay with this solution/compromise. I definitely don't want to put my baby at more risk than she already is, and a 24 hour EEG will give us some good data to work with. And if she has seizures, it's not the end of the world... it'll just be one more obstacle of not knowing that we will have overcome.

We asked other questions, will Sadie have cerebral palsy (CP), will her vision be normal, do you think she'll be able to walk? Dr. Jarrar told us Sadie would DEFINITELY have CP, as to the severity of it, we don't know...and that they don't diagnose CP this early in life. WHAT?! She said that they will be able to see in the MRI if Sadie's occipital lobe (the vision center in her brain) is suppressed, but we won't be able to see if the connectors from her eyes to her occipital lobe are working correctly, the eye dr. will probably do a specific test to check for that (but they don't do it before 6 mos). And she told us Sadie is strong, but there's no way to tell if she'll walk or be in a wheelchair. She said that with CP, you don't ever regress, because it's based on damage done, but that you can get better with therapies, and that is the only way to make it better. I told her Sadie is only about a month behind developmentally and she made it sound like at some point she could plateau in her development, so we need to keep an eye on that and not slack off with our therapies definitely!

As we walked away from there we agreed that 1. we feel that Dr. Jarrar is very negative toward our situation, and 2. she's kind of hard to talk to about anything. I mean, at one point I asked her what the dose would be for the keppra, she told me not to be concerned that it would be calculated according to weight, I told her, but I am concerned because I'm the one who has to administer it and deal with the coughing-gagging-choking. She seemed annoyed that she had to make that calculation for me right then. (by the way, .7-1 mL 3 times a day) So, I think I will talk to Dr. Wendy (the pediatrician) Monday about maybe seeing a different neurologist.

This 24 hour EEG is a big deal for Sadie and her brain. Please pray for healing in that little noggin, we want to see no seizures, no tendency for seizures, and increased brain activity since the last time. Please also pray for the MRI that we see improvement. Sadie's last MRI was done the day she left the hospital, she was one week old. And we still need that head to grow, ie that brain to grow!! Also please pray that Sadie can overcome these negative diagnoses through therapies and that she will continue to improve and progress WAY beyond what these doctors expect. We know God does miracles and we expect one in our family.


  1. I will pray for precious Sadie! I think asking for a different Neurologist is a great decision, you DO NOT need that much negative energy around you or sweet Sadie. You need all the positive you can get there are better ways to deliver the much need information. As parents you should have questions and any question you ask matters when you ask. Especially in a time when so many say parents don't care it's a wonder why! Stay strong and your family will endure!

  2. You are very strong smart parents. I have faith that God will provide a neurologist who has a personality and attention to detail that you need. Don't loose faith in doctors, the Lord has allowed us to have them and the right one will give you all hope and celebrate in the positive. Unfortunately some of the smart ones don't have personalities to back them up. Sounds like the quest for the least harmful and most beneficial treatment for her is on. Your close eye will see to it that nothing gets over looked. You are AWESOME parents. She is an Angel to us all. Love Amy Hogan

  3. We think the move to another neurologist is a very wise move, what with her negativity. You guys don't that to deal with that too! Love you all, Bill & Becky.

  4. What she said about diagnosing CP is correct. It's never before the age of 2. (Even if a child probably has it....)

    There is a cascade of development, and I think that some children do it in a different order. Waiting until age 2 probably helps with false-diagnosis.

    Hang in there!!


    P.S. See if your insurance will cover Dr. Bernes. A second opinion for her prognosis/treatment is always a good thing.

  5. I think a new neurologist is in order. My adult daughter had a grand mal seizure when she just turned 19 so she couldn't go to the pediatric neurologist recommended. We had to quickly get a dr. taking new patients. She has changed to a great new dr. in downtown Phoenix. My sister-in-laws great nephew also sees a great dr. out here in the East Valley. Let me know if you need names. Studies are hard and I remember keeping my daughter awake all night for her eeg the next day! We don't like meds but believe me they are important and the correct one and dosage is probably more important than any other med! My daughter probably had little seizures we never noticed until the big one. They couldn't find a reason, this year new dr. better MRIs and we found the cause, which nothing can be done about, she was born with little growths in her brain. My prayers are with you, this has been the scariest thing I have gone through for the past 7 years.

  6. Hello Beck Family [I'm Criss' sissy]: ALWAYS go with your 'gut' feeling. I have a 30yo autistic daughter who, at the age of 7, was sent to a neuro-ped for an evaluation. I asked at that time [because of my reading] if she could be autistic. I was assured that she didn't bang her head or flap her hands or rock back and, hence, she couldn't be autistic. Well, at 16 she was finally dx at Oregon Health Science University with atypical it turns out it is actually Asperger's Syndrome. I speak from experience. Doctors do the best they can with the knowledge they have but they don't KNOW everything. I truly think that we as parents operate on another level. Keep on, keeping on, my dears.