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My Tootie is going to the hospital for 3 days. She is going to get an MRI and a 48 hour video EEG. Thankfully they have to sedate her for the MRI so, they will put the leads on while she is still asleep.


Her neurologist is trying to determine if Tootie is still having infantile spasms or if she is transitioning to another type of seizure. The neurologist is wanting to start Tootie on Vigabatrin.


She has been wanting to put Tootie on this for a while but we were hesitant to start her on this med since one of the side effects is loss of peripheral vision and it wasn't approved by the FDA; it was just approved this year. After speaking with Tootie's ophthalmologist, we are now comfortable in trying this new medication.


Tootie has tried every epileptic drug on the market and has used various cocktails; unfortunately her seizures haven't stopped but they are somewhat controlled. I'm hoping we will get good results from the MRI, EEG, and Vigabatrin. Please keep Tootie in your prayers, thank you!


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Tootie has my prayers as do your whole family.


I hope this new medication is the answer to the seizures. What a brave little person she is and may God bless her for it.



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Taylor will surely be in my thoughts and prayers as she's faced with this unpleasant ordeal. Also of course for answers sought to bring her resolution to her seizure problems.



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Thank you Sue and Maria :hug:


Her neurologist has been telling us that we need to decide what to do because Tootie is getting older and hasn't outgrown the infantile spasms.


The new med was one option as well as putting her on a Ketogenic Diet. With all the problems we've had with the school district this year, I know this isn't feasible.


As a last resort, I say last for us; Tootie's neurologist has been wanting to do this for a while: brain surgery. She wants to remove the damaged areas; which would be great if it solved all of Tootie's problems but that's a gamble we're not willing to take. Tootie has made significant strides in her recovery and the surgery may cause her to regress so, it is out of the question!


If I can, I will try to blog while she's in the hospital. Anyway, thanks for listening :friends:

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Of course, Tootie will be in our prayers. I have no advice except to stay close to Tootie and give her lots of hugs.


Vi and Misti

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hi Elondie:


Tootie will be in my thoughts and prayers, and I pray that may God work through this neurologist to get this seizures under control. please keep us updated on how everything is going on.




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I will be praying for Tootie and your family. Hoping for some peace in your hearts to guide you through these very tough decisions. Debbie

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Vi,I certainly will be giving Tootie a lot of hugs. In fact, I'll tell her they're from her cyber aunties!


Asha, it's so nice to see you; I have missed you! I will try to send updates.


Ruth, serenity is what I'm hoping for; I pray we get answers.


Nice to meet you Debbie, thanks for the prayers and for stopping by.


Thank y'all for listening :hug:

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yolie, sorry for my late response. i to hope this med is the answer for tootie. bless her heart. i have her and the family in my thoughts and prayers. you know how much we love out blessed angel tootie! keep us updated as you can.




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Thank you for the prayers Kimmie and Karen :hug:


Since the neurologist was able to determine Tootie is still having Infantile Spasms, we were discharged yesterday.


The neurologist and nutritionist talked to us about the Ketogenic Diet again and we all decided it probably wouldn't work for Tootie. While on the diet, you not only have to eat what's on it, you have to finish every meal. Tootie's appetite fluctuates too much for this to work.


The neurologist and her Nurse Practitioner again suggested brain surgery. Crystal told her no, that wasn't going to happen.


Crystal does a lot of on-line research and is in various support groups. Crystal contacted the Chief of Neurology of one of the major U.S. hospitals. He requested Tootie's previous Positron Emission Tomography (PET) scan, Computerized Tomography (CT) scans, MRI's, and EEG's. After reviewing all the information requested, he told Crystal Tootie was not a good candidate for the surgery.


I believe in my heart, we are making the right decision by declining the need for surgery. There are millions of people who live with epilepsy. I pray this new drug stops her seizures but if it doesn't it's okay. Tootie used to have 300+ seizures a day and is down to about 30 a day.


Tootie knows when she's about to have a seizure and we know what to do for her. We just need to continue to educate the school about seizure preparedness.


As always, thank y'all for listening <3


Oops, I forgot to mention Tootie is going to start the Vigabatrin. Since it was just approved by the FDA, the neurologist told us there's a lot of paperwork involved so, it will probably take a week before we can get a script.

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