Please Pray for Katie!! (trying to get into an epilepsy center)

[katie's mom]

So sorry I've been MIA for so long - things have been rough, but I needed to let you all know what's going on:

We are trying to get Katie into Johns Hopkins but are also talking to LeBonheur. Our neurologist has finally admitted that her case is over his & our dietician's heads and that we need more specialized care.

To those of you who don't know, here's a brief summary of Katie's history - she was a perfectly normal child until her first tonic clonic seizure hit in Sept 08 - 1 week before her 4th birthday. After December she was having too many daily seizures to go back to pre-k. After being hospitalized for non-convulsive status in February, she was diagnosed with Doose Syndrome/MAE (related to Lennox Gastaut but not quite as bad). She has experienced debilitating cognitive regressions and pretty much acts like she is autistic all the time and also has rage spells that we mostly attribute to Keppra. After failing 7 medications she was put on the Ketogenic Diet on April 25th. Although she had some success with the diet she has been vomiting and my relatively inexperienced local dietician really doesn't thinks she can manage this issue or Katie any more.

Because we have been told that the diet is Katie's last hope for seizure control and avoiding a life-sentence of cognitive disability, our first choice is Johns Hopkins because of their expertise with the diet and world-renowned surgical team in case Katie is one of the unlucky ones that the diet does not work for. We spent all day yesterday talking to Hopkins and even though they have not yet closed the door for us they haven't exactly thrown it open yet, either. Hopkins has reputation for being particularly hard to get into - especially for out of state patients that have initiated the diet elsewhere.

Our other option is the LeBonheur Center in Memphis, TN. Not as renowned as Hopkins but still very respectable for both the diet and surgery. They were much more welcoming and offered to try to work Katie in mid-July if they get a cancellation.

Our East TN location puts us at pretty much equal distance between the two centers. Either way, we are just praying for the best care possible for our daughter at a place that will offer her the most hope!

Hugs to all of you who have supported us through this processs- and a gigantic hug to Ann for her prayers and special assistance with contacting Hopkins over the last couple days!!

Kristi

[majormana]

I'll pray for her. good luck but if you can't get her into hopkin's you may want to consider trying shriners(not sure spelt right). just a thought.

[Cubster]

She and you and your family will be in our prayers.

Colleen

[katie's mom]

Good news!! Johns Hopkins just accepted her late this afternoon!! She will re-initiate in their hospital on August 3rd!! In the mean time we are going to raise the ratio at home and get ready for the transition, paperwork, etc.

Thank you so much for your thoughts and prayers!!!

Kristi

[brain]

Thank you for keeping us updated, we will
continue to keep her in our thoughts and
prayers and continue to keep us updated
and posted on her progress!

[RobinN]

Such great news. I hope this is your "answer".
Give Katie a hug from us.

[KonradV]

Good luck to your daugher and you! I wish her all the best and may she get into one of the epilepsy centers.

[LuvMyTwins]

Much love and luck on your new journey. You are in my thoughts and prayers as you embark on this phase.---LMT

[Dutch mom]

Good Good Good Luck Kristi and Katie!!!!
Let's hope John Hopkins will be able to get out all the magic that's in the diet. We've done so much finetuning and had our tops and downs in 5 years on the diet, believe me, with such positive results before, it IS in there, even for a worst case kid like mine. May this miracle be given to your Katie too!
Keep us posted.
Hugs.

[Kansas Educator]

My prayers are with you too. May this be the answer you are seeking.

[Meetz1064]

and prayers are with you....best of luck to you and Katie....

[alivenwell]

I send my best wishes in your and Katie's direction. Hopefully they will make significant progress for Katie and help her. I'll keep my fingers and toes crossed (so will my dog).

[katie's mom]

Thank you all so much for your prayers - they are working!! When we upped the ratio to 4:1 in July we noticed a dramatic turnaround - especially the cognitive brightening. We finally have our old Katie back for the first time all year and we have missed her terribly. She still has between 0 to 5 head drops per day and occasional vomiting. We are looking forward to learning from the experts at Hopkins August 3rd. I'll keep you posted. PS: We've also weaned Keppra (the rage drug) and are so glad!! I'd be happy to help anyone else interested in the Ketogenic diet.

[flinnigan]

Congratulations and Bless her. I'll keep her and you in my prayers.

[Kayleesmom]

God bless you both (and your family) and the best of luck on your trip next week. Please let me know if there is anything I can do.
We'll be praying for you guys.