Thursday, July 24, 2014

OH CBD Where art thou?

We have been dosing Edmond with CBD oil for 8 months. 

As we slowly increased the dose, he went from 7 seizures a day to 3 a day, and they lessened in intensity, duration, and recovery time was better. And results have been consistent. 

At the end of June, I miscalculated when I needed to get a new batch of oil for him and he was off of it for a few days. During those days we visited the neurologist and talked about waiting a 2 week period to begin again so we could see if it was really helping his seizures or if it was some kind of fluke. Especially the neurologist didn't want us to waste more money on it if it wasn't really helping him. We have been paying about $480 a month for the oil, and he is not even at a full recommended dose yet. So we have been holding at the mid range dose. 

So we decided to go ahead and wait. We did it for about 8 days. After 3 days, his seizures intensified, from being 10-20 seconds (just a flexing of the arms and face) to lasting over a minute and were physically stronger involving his entire body stiffening and recovery time would be over an hour long. This was happening about 3 times a day, and would cluster, and have two in a row, which we rarely see clusters since we started CBD, I almost never saw clusters while he was on the CBD. 

So on Monday night, July 7th, I couldn't take it anymore and put him back on CBD, didnt gradually introduce it this time, just went back to his previous dose of 2ml 3x a day, which is 75mg a day equalling 2.34mg per lb. Therapeutic dose is 3-5mg per lb. So he is still not at a full dose that he might need.  The next day, seizures were lighter again. And he smiled for about an hour during therapy. Which we did not see smiles from him since he was like 3-4 months old, and especially not big smiles.. it was soooo sweet. The rest of the week was 1-2 seizures a day, some days no seizures, and they were back to being light again 10-20 seconds and fast recovery. Today is July 24th and seizures are still light and we didn't see any today either.  

So guess what? CBD works! We believed in part before, but now we super believe. 

We are thinking about growing it for him ourselves and will be moving in that direction I think. He has his card and everything is legit, but it's a big process and commitment but I cant see us paying for the oil long term.  Get ready for an upcoming fundraiser again... starting to plan it out now, but I like the idea of doing another 5K, but doing it locally here... it's a great, healthy, and uplifting way to come together for Edmond... and continue to get him the medicine he needs until we can figure out the process for ourselves... 

THank you for all the love and support! Hoping to get more smiles out of him soon, here's a pic of that day for my proof and my motivation to keep fighting for him. 

Such a handsome sweet loving boy. He is such a blessing of love and sweetness.... and dimples! 



In other news, we got a blue curb for Edmond! Victory!

We are in the process of getting his diapers paid for by Medi-Cal. Victory!

And now that he turned 3 on 7/7/14, He is eligible for school services through the school district and is in the process of being enrolled in school for the Fall... I'm super nervous, but I think his nurse Ryan, will be able to attend with him, so that will be such a comfort to me. The school is amazing and will keep him busy with activities and exercises that he needs through the week. We toured the school and Eden loved it and got to see all the other kids like Edmond there, so that was such a blessing as well and that she knows Edmond is going to school like other kids. We are really blessed to live in an area that has such a great program, so I guess it's not the worst thing to live in Daly City after all :)