Keto and Seizure Freedom?

As I posted a few weeks back, we switched from Modified Atkins Diet (MAD) the Ketogenic Diet (keto) with the help of the team at Swedish on November 1st.  It has been going pretty well as we made the adjustments that the Swedish team suggested.  It took awhile, but we finally found a good way to give him his Zarontin medication and he is taking it with few issues.  We have been trying lots of new recipes - some he likes and some he does not like, but we keep trying.  We also started giving him MCT oil in his diet as they suggested which is going ok, but does cause a few issues.  We have had two days of vomiting since we started keto and the diarrhea/constipation issues have remained and on some days have gotten worse.  The first week on keto he seemed to be more lethargic - a bit more like when we started MAD, but that has gotten better as well.  I think his body just needed time to adjust to the more strict diet and the increased amounts of oil we are giving him now.

I am THRILLED to report that Joshua had his first seizure free day in almost 12 months on Saturday, November 24th.  I couldn't believe it sitting there holding him - I didn't think it could be for real.  I just kept waiting and waiting for one to come and it just never did.  It was an AWESOME feeling!  He had another two seizure free days after that so we had a lot to be thankful for with 3 seizure free days in a row - something we had never seen.  Last Tuesday he did have 4 seizures, but then went seizure free again for the next 4 days until last night when he had 3 seizures.  He did not have any tonight so I am hoping we are on a new streak and that it will last a lot longer - hopefully forever!  We now know that Joshua IS capable of being seizure free and that is GREAT NEWS and I'm holding onto faith, hope and love that Joshua will one day be seizure free for good. 

We had a check-up with the Swedish keto team last Monday and got the results of his blood work.  Most of his blood work came back normal, but his cholesterol was a bit high, his Vitamin D was low, his Carnitine was low and he had a little bit of protein in his urine.  So, in addition to all of his other medications and supplements we are now giving him a Vitamin D supplement and Carnitine supplement.  The Carnitine supplement will also help with his cholesterol so it serves a dual purpose and although it is expensive to purchase, he loves the taste of it and it is the easiest thing we have to give him every day!  The protein in his urine was not worrisome and they said it could be caused by a little bit of dehydration since the blood was drawn in the morning before eating or meds so we are just trying to get more liquids down him.  We will have his blood levels drawn again in 30 days in these areas to see if he has improved with the changes we have made. 

His blood ketone levels were perfect at 4.8 so that was good news to hear.  In addition, his medication level for Zonegran was at a therapeutic level so that was good as well.  For some reason the lab did not process his med level for Zarontin so when we were there we had that one drawn and haven't received the results yet. 

Joshua getting his blood drawn - he even does it with a smile!!!

He is such a trooper - so proud of him!!

When we arrived at Swedish they had his genetic testing kit all ready to go and had verified coverage by our insurance so they sent us over to the lab after our appt. to have his blood drawn for the genetic testing.  The genetic testing looks at the genes associated with childhood epilepsy and glut-1 deficiency, but we won't get the results for about 3 months.  It will be interesting to get the results to see if there is any known cause of all of this and glut-1 deficiency is important to rule out because if he had that, he would be on the diet for a LOT longer, possibly the rest of his life.  Anyway, more to come on that when we get the results in a few months.

The next step for us is an EEG to see what activity Joshua has going on in his brain still, even if we can't see it (called sub-clinical seizures).  On his previous EEGs he was showing sub-clinical activity so we are REALLY interested to see what that looks like now that we have pretty much eliminated the clinical seizures (the ones we can see).  And, the best part is that if his EEG is pretty clear, we will be able to start weaning him off another one of his medications.  That will be thrilling and it would be great to get him off his remaining 2 medications in 2013.  I am really hoping if we can get him off the meds and on diet therapy alone it will clear up some of his cognitive and short-term memory issues that is causing him learning difficulties in school.  I am really excited, but also nervous for the EEG as a lot of our next steps is riding on the outcome of that EEG.  The EEG is scheduled for December 19th/20th as we will be in the hospital over night so they can monitor his brain activity while he is sleeping at night.  This will be Joshua's 4th EEG this year - he is getting to be an expert.

We are feeling HOPEFUL and that we are on a good trajectory!  I really wanted a seizure free day before Christmas and I got one.  I am hoping for a LOT more now and sustained seizure free days over a longer period of time, but I will take what I can get.  There is a lot to be thankful for - we have come a long way.  There were many days when I thought a day without seizures might never come and here it has happened.  Ok - crying now so I have to close.  I wish all the kiddos out there a seizure free night as they ALL deserve it!