katie's mom
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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 neuro 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
We are trying to get Katie into Johns Hopkins but are also talking to LeBonheur. Our neuro 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
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