We just got back from taking her out to Johns Hopkins to see Dr. Kossoff and team. They followed her through the 2 years she was on the Ketogenic diet so they know her history very well. Plus they see the rare seizure disorders and are so much more experienced in them then Primary Children's. We wanted to get his opinion on what if anything we should do with her medication. A lot of time at 2 years of being seizure free you can start weaning the medication. We are sooo nervous about changing anything even though the medication never seemed to help much, the taking of it away always was hard for her. She is currently on 3 seizure medications (felbatol, Keppra, and vimpat). That is a lot of medication!
It was such a good visit with Dr. Kossof, I really love that place. We had his first appt after lunch and when we were in the waiting room he came walking back from lunch and stopped because he had recognized us, he introduced his team to us and tried to give Lauren a hug. It has been 3 years since we had seen him, he is a world famous doctor in this field and sees so many children, I was shocked that he remembered us. Not only that he remember details about her condition and things we had done over the years with her that were not in the notes. Such an amazing doctor.
During the visit he wanted to know exactly what had happened and what we had done that could of made her go seizure free for so long. We have often wondered why the doctors at Primary Children have not done this with us. It is such an amazing thing that she went seizure free we would of thought that they would be using her for research and stuff. I had one doctor at Primary's sort of ask what happened but nothing that extensive. Dr. Kossoff wanted all the details, I guess the difference between a research hospital?
He then looked at a copy of an EEG we had done in August. He brought in 3 pages of copies of concerned area in her EEG and explained them. Said that overall her EEG looked good but that there were 3 spots where there are abnormal activity (all when she was walking up and going to sleep). It showed that this syndrome is not gone but that it might be on the way out?
He then recommended that we start weaning Flebatol very slowly, just for the fact that she is on 3 drugs and that one being the most dangerous and hard on her body. Then if that goes well in a year wean another drug. He did say there was a small chance if she did loose control through doing this that we would never be able to get control of her seizure again. But he thought that would be low and thought it would be best to not have her on so many drugs. The job of these drugs is to slow the brain down to lower seizure thresholds. When you are on 3 drugs slowing the brain down the effect is pretty high, plus the drugs are not the best for the liver/body(it has been amazing that she is doing as well as she is). Especially when we don't know if these drugs are even doing anything because she has been on 2 of them when she was in a very bad seizure state.
I don't know what we are going to do right now, I am just sitting on the info. I am very scared to change anything but know deep down it is worth a try?
Overall it was such an amazing visit and worth a 4 hour plan ride any day. Just to have someone talk to you that deals with this on a daily basis, sees the long term, has such confidence and knowledge to share was so refreshing!
Lauren's visit to Hopkins in 2008 next to our last trip out (and hopefully our last).
9 comments:
Tami, this is such WONDERFUL news! Lauren looks fantastic, too! What a beautiful girl. I can't even tell you how happy I am for you all!
We recently backed off on Jade's keto ratio and her ketones dropped for about 3 weeks. It was terrifying!! I had to reason with myself that as we wean her off the diet (which is still a long way away!) the eventual goal is for her *not* to be in ketosis... so I can't panic just because I'm seeing a change.
I know the med wean is scary and there are no guarantees... but remember how scary it was to believe that Lauren could stay seizure-free for a few weeks or month? You are working with an amazing medical team. I'll keep my fingers crossed for you, that a med wean will be relatively easy, and help Lauren's brain heal even more.
XOX
such exciting news! thank you for sharing...keep updating on your decisions. are you still on the keto diet?
HI Tami,
I have been wondering how Lauren was doing. She looks great-I can't believe it has already been two years since a seizure. We still pray for her, and hope those seizures will stay away forever. Love you guys!
-Monae
Tami, I check your blog every 3 months. Your faith and strength inspire me and I pray for Lauren. When Heidi (Guffey) helped with Lauren I was always asking her about Lauren so she gave me the blog info. We have a young boy in our ward who had the right half of his brain disconnected 2 years ago to try to stop seizures. God be with you, always.
How is Lauren today?
Lauren has grown so much! She is beautiful. God bless.
Hi, just stumbled across your blog and wanted to thank you for sharing. We are going through a similar experience with our daughter and are looking forward to get our girl back.
All the best from Norway.
How is Lauren?
I had an epileptic fit for the first time 5 years ago in the middle of supermarket on my birthday of all days, wasn't fun for my kids to see it, it still haunts, I've tried many anticonvulsants and had never been able to stop the seizures. Surgery was not an option. I was still an epileptic patient, who have completely lose hope. As the problem is always embarrassing and disturbing. While surfing the internet one fateful day, I learned about Doctor on the internet called Lawson . I contacted him with some info and I ordered for the Herbal medication and used the medication for 6 months, though hesitantly, considering the fact that I have done a lot of procedure. After which I went for medical test It worked! I've been seizure free, Over a year now, I have not show any symptoms of seizure and I believe I am cure if you want to contact him at this email dr.lawson52@gmail.com.
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