Getting Worried

I am pretty much convinced at this point that the reason for Gabby's on going diarrhea is the Ketogenic Diet she is on to help control her seizures. If you'd like to know how the Keto Diet works, click here http://www.charliefoundation.org/ . When she was in the hospital and on only IV fluids and clears she didn't go at all. Once we started her back on the diet the diarrhea has all come back again. We have a few more things we can try with the diet, but I'm so afraid that it isn't going to work and we will have to give up on it.


When you have Epilepsy you have very few options when it comes to seizure control. First you try seizure medications. Gabby has been on several. We have added meds, decreased meds and upped doses. This has helped some. When her seizures first started, she was having around 40 a day! With help from the meds, she was having around 10 a day. Obviously that's better, but it's not great. Plus all of the meds have side effects some of which can be pretty scary, like complete liver failure. Luckily the only side effect Gabby has had is being tired.



Another option is surgery. This is not an option for Gabby and here is why. Lots of times when people have drop seizures (this is what Gabby has), the Neurosurgeon will go in to their brain and cut a little piece called the Corpus Callosum. It's a connector between the left and right sides of the brain. This will often completely stop the drop seizures. This won't work for Gabby because she was actually born without her Corpus Callosum. So explain to me how she is even having drops if that connector isn't there! Hmmmmm? She's a mystery. So anyway, no brain surgery for her.



Option 3 is the Keto Diet, which I'm sure all who are reading have already gone to the Charlie Foundation web site and read up on it!! Good Readers! The diet has been helping control her seizures a little bit. She has gone from about 10 a day down to around 3 a day. Ultimately I'd like her to be seizure free, but 3 is better than 40 or 10!! I am VERY tired of dealing with her poop issues though........... not sure how much longer I can deal. She has also lost a lot of weight being on the diet. She looks like she's from a Third World Country, just skin and bones. My eight year old weighs a measly 37 pounds. She had been steady at 39 lbs. but lost two lbs. after this latest hospital stay. Here's a pic:

The last option I know of for Gabby is the Vagus Nerve Stimulator. From what I understand, it's sort of like a pacemaker. The docs implant a device into the patient's neck and connect it to their Vagus Nerve. Read more about it here: http://www.epilepsy.com/epilepsy/VNS.

So as you can see, we are running out of options. Scary thought. The seizures have really impacted her life and ours. She has to wear a helmet if she's up walking around. She can't go run around outside on her own, I either have to hold her hand at all times or she is sitting in her stroller. She has to have a bath chair in the tub. She has a special chair she has to sit in at the table. Oh and I almost forgot about her bed. She is still sleeping in her crib for safety reasons. She's very small for her age so luckily she still fits, but her toes are right to the end now. We are in the process of getting her a Sleep Safe Bed http://www.sleepsafebed.com/, but it's very expensive and our private insurance has declined it. We are still waiting to see if her Medicaid will pay for any of it. She spends a lot of time on the couch because she knows if she gets up to go play she might fall down and get hurt. It's very sad to see how much she has changed over the last few years. She's a different little girl. I don't want her to live the rest of her life this way. I have heard that Stem Cell treatment could really help people with Epilepsy and that treatment could be a reality and available in under 10 years. I hope so!