Yesterday, which was Saturday, Jonah had at least 2-3 daytime seizures followed by an 8 minute tonic clonic(grand mal) shortly after falling asleep last night.😞 He went over a month with no daytime seizures. I really thought that was going to be the end of the drops but apparently I was wrong. I hope the seizures aren't creeping back in. It is common with Doose Syndrome to have honeymoon periods where their is little or no seizure activity then for some reason what ever was working fails an the seizures come back. I guess that's why they call it intractable seizures.
Saturday, July 26, 2014
Jonah continues to have seizure free days!! Nights are about the same also with a quick tonic and once in awhile a tonic clonic closer to morning. We go back to the Mayo Clinic at the end of next week for a doctor visit and an IVIg infusion.
Justin has not been feeling not all that great lately. He has been having these dizzy spells which is his vertigo. Some other symptoms were going in so he decided that it was best to get things checked out. He went down to the urgent care and they had him go to the hospital ER for some tests. They did a whole bunch of tests including an EKG, MRI and blood work. So things are checking out good. This was all tonight.
The hospital bills are finally rolling in from all the hospital/doctor visits Jonah has had. Over $2000 after insurance through June 17 already.
Shane just finished a great week at British Soccer Camp. This was his third year. Every year he has so much fun and learns so much.
Tyler has been preparing for the upcoming grinder(last chance qualifier) for the World Pokemon competition this August. He will be competing with 500 people to try to get a spot at World's to which only 4 get in. Shane ha already been invited so he won't have to go through the grinder like Justin and Tyler.
Vanessa is a social butterfly. She I always playing with her friends every chance she can get. I think she'd have sleepovers every night if she could. :)
James is loving everything about summer- bare feet, water fun, bike rides, Mario... James and Jonah are becoming great buddies!
Ethan is my glow. He is always bringing a smile to my face. He is at that super cute toddler stage. Goes by WAY too fast. :(
Saturday, July 19, 2014
Not much has changed since my last Jonah update. We went down to the Mayo again this past Friday for another IVIg infusion. Things went well with that.
Jonah continues to have a quick tonic or myoclonic within 10 minutes of falling asleep almost every night and an occasional tonic clonic closer to morning. I would like to see him 100% seizure free but am so thankful he has been seizure free during the day for 1 whole month already. Praise God! He haven't fallen and hurt himself from a seizure in over a month.
We will address the night time seizures during out next appointment with his doctor in 2 weeks. His ketones have been low so they my want to shut something with his diet before then.
Getting his infusion
Thursday, July 17, 2014
Saturday, July 12, 2014
The appointment at the Mayo was pretty quick and uneventful for driving over 4 hours to get there and back. She was very pleased to hear that he was completely seizure free during the day and almost during the night.
She wouldn't comment when asked what she thinks is doing it but did say that that she would like Jonah to stay on IVIg for at least 2-3 months and that it is definitely NOT experimental. She also said that if he remains seizure free we can start peeling back back things. I'm thinking Depakote.
Jonah continues to have tonic non convulsive seizures once or twice after falling asleep and or or a tonic clonic convulsive closer to morning occasionally. Other than that during the day has been completely seizure free.
Thanks again for your continued support.
Tuesday, July 8, 2014
Jonah had a 5 minute tonic clonic (grand mal) seizure last night in his sleep around 2am. Please keep praying that the night activity will stop.
Sunday, July 6, 2014
I guess no news is good news. Jonah has not had anymore of the bigger seizures since last Monday. Last night shortly after falling asleep he had 1.5 tonic seizures and 1 tonight. Other than that he has been seizure free. It has been amazing to watch him be a normal 4 year old. Running around, swimming, riding a bike and not worrying so much if he going to have a drop seizure and scrape up his face.
Justin and the older boys have been in Indianapolis at a Pokemon USA national competition since last Wednesday. Neither of them made top cut although Shane came pretty close.
Thursday, July 3, 2014
Today, Barb and I made the long trek down to the Mayo. We left this morning at about 6:30am and didn't get home until 6:15pm. It was a long day. Both Ethan and Jonah were troopers.
Jonah had his next infusion of IVIg today. It was different than last time. Last time he was given 3.6ml where as this time it was 10ml. Quite a big difference. It took about and hour longer. He seemed to handle it fine so far at least.
Praise God Jonah has not had those night seizures the last 2 nights!
We found out today that the appeal to the insurance company for them to pay for the IVIg was denied. So we cannot have the infusions done locally. We will need to drive down to the Mayo every 2 weeks. This IVIg is extremely expensive. Insurance says it's still experimental in treating epilepsy.
Tuesday, July 1, 2014
Jonah had 2 more big seizures in his sleep last night. I really hope this is not a new pattern. It's hard to sleep when your child wakes up seizing.
Other than the night seizures Jonah has been having great days. He has mastered riding a two wheel bike. I think we went around the block 10 times today.
I will be taking Jonah back down to the Mayo on Thursday to get another IVIg infusion. The prior authorization from our insurance company was declined. Which means they don't want to pay for IVIg for Jonah because it is so expensive and they think it is still experimental or something I think. We can not have it done local because of the insurance issue.