rackelsmom
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What types of seizures (and how frequent) were you experiencing before starting the alternative treatment?
Absence, partial complex and tx, onset March 06 with 10 hour status. After that the sz's grew in frequency to 30-40 per day until grid surgery and first resection 2-07 and 3-07, then frequency fell to 15-20 per day, 3rd resection brought it down to 10-12 a day.
What anti-epileptic drugs (medications) had you tried prior to the alternative treatment?
She was initially started on Keppra, then moved onto Tegratol, Trileptal, Lamictal, Topomax, Dilantin, Zonogran, Valproic Acid, Clonazapam and eventually even the Diastat didn't work
How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife)
Onset was 3/06 and we were referred to the Epi at Hopkins in 7/06, then they referred us to neurosurgery in 10/06, surgeries in 2/07. During the interim she was tried and failed various mixes of medications
If the treatment requires active participation, how diligent were you in applying it?
Keto began 11/07 and it's been followed religiously! Rachel has been very good about asking before she eats anything and has only had one incident of going off the diet when a Sunday School worker accidentally gave her 12 oz of apple juice. She came out of Ketosis but remained sz free
What changes (improvements or otherwise) occured with your seizure control with the alternative treatment?
Initially it was rough, but after the first couple weeks, she would have sz only when ill. After the first 5 months, she stopped having sz's completely. She was on 5 different AED's in 11/07 when she started the diet. Now she's completely AED free! Before Keto she had lost many of her cognitive skills, she was barely verbal and couldn't express herself except through aggressive behavior. Now she is counting, singing her ABC's, her behavior is greatly improved and she is usually a very happy girl!
What (if any) adverse effects/events did you experience with the alternative treatment?
The only issue we've had is occasional constipation, quickly resolved by spaghetti squash meals. LOL! That and at times she is sad when others are having things she can't but she is diligent about her diet and doesn't want to go back to how it used to be! Dr. K believes if all goes well between now and November she will be able to begin the wean of the diet then, after only 2 years!
How much did it cost you to implement the alternative treatment?
Induction at Hopkins required $800.00 up front which covered the scale, literature, and dietician's expenses. Some insurances will reimburse you, for us it didn't matter, we were paying over $1200.00 in medication co-pays per month so that was a drop in the bucket!
The meat is a bit pricey but we have a farm and grow our own veggies, have chickens for eggs and friends we get the beef from. All in all the most expensive thing we pay for is the cream and sour cream. Not too bad at all!
Absence, partial complex and tx, onset March 06 with 10 hour status. After that the sz's grew in frequency to 30-40 per day until grid surgery and first resection 2-07 and 3-07, then frequency fell to 15-20 per day, 3rd resection brought it down to 10-12 a day.
What anti-epileptic drugs (medications) had you tried prior to the alternative treatment?
She was initially started on Keppra, then moved onto Tegratol, Trileptal, Lamictal, Topomax, Dilantin, Zonogran, Valproic Acid, Clonazapam and eventually even the Diastat didn't work
How long did you try the alternative treatment? (Not applicable to Lobectomy or Gamma Knife)
Onset was 3/06 and we were referred to the Epi at Hopkins in 7/06, then they referred us to neurosurgery in 10/06, surgeries in 2/07. During the interim she was tried and failed various mixes of medications
If the treatment requires active participation, how diligent were you in applying it?
Keto began 11/07 and it's been followed religiously! Rachel has been very good about asking before she eats anything and has only had one incident of going off the diet when a Sunday School worker accidentally gave her 12 oz of apple juice. She came out of Ketosis but remained sz free
What changes (improvements or otherwise) occured with your seizure control with the alternative treatment?
Initially it was rough, but after the first couple weeks, she would have sz only when ill. After the first 5 months, she stopped having sz's completely. She was on 5 different AED's in 11/07 when she started the diet. Now she's completely AED free! Before Keto she had lost many of her cognitive skills, she was barely verbal and couldn't express herself except through aggressive behavior. Now she is counting, singing her ABC's, her behavior is greatly improved and she is usually a very happy girl!
What (if any) adverse effects/events did you experience with the alternative treatment?
The only issue we've had is occasional constipation, quickly resolved by spaghetti squash meals. LOL! That and at times she is sad when others are having things she can't but she is diligent about her diet and doesn't want to go back to how it used to be! Dr. K believes if all goes well between now and November she will be able to begin the wean of the diet then, after only 2 years!
How much did it cost you to implement the alternative treatment?
Induction at Hopkins required $800.00 up front which covered the scale, literature, and dietician's expenses. Some insurances will reimburse you, for us it didn't matter, we were paying over $1200.00 in medication co-pays per month so that was a drop in the bucket!
The meat is a bit pricey but we have a farm and grow our own veggies, have chickens for eggs and friends we get the beef from. All in all the most expensive thing we pay for is the cream and sour cream. Not too bad at all!
