It's been quite a while since I've updated things here. Once we got home and settled from the last few hospital visits we upped his clobazam up to higher dose, and slowly but surely Ethan seizures started to go away! The drug is working! This isn't to say he is having no seizures. We still feel occasional jerking, and without looking into his brain with EEG there is no way to know for sure. He has had 2 tonic clonic seizures in the last month. These are the typical seizure you think of, the ones you see on TV. His normal tonic clonics do not stop. They are violent and long, and last upward of 6 or 7 minutes on average. Since he's been on the Clobazam at the higher dose, he will go into one but once it gets to the bad point it just kind of fizzles out and he comes out of it. I'm obviously not a doctor, and don't know exactly what the drug is doing, but it seems that it is stopping them from taking their full course and getting out of control which is amazing! His quality of life has definitely improved. Our days don't revolve around seizures at this point, they revolve around Ethan being a normal (mostly) little boy, playing with his dog, playing outside (because it's nice out!), going to school and playing with his friends, and of course bickering with his little sister:) Two big seizures a month is no big deal when you've become accustomed to 100+ a day! We are also finally, after a year and a half, weaning him off of Depakote!!!! It's a nasty drug with bad side effects, and he's been on an ever increasing dose for over a year. It has never made any difference, but it's a front line epilepsy drug that often works well so they have been reluctant to take him off it. He's currenly at only 250mg a day, down from 750mg a day with no increase in his seizures. That leaves him on only 3 drugs so this is good news!
So that is the good news, and mostly the end of it. During our last neurology appointment we brought up to our doctor that when Ethan is sleeping he does this weird breathing thing. Basically he'll take a big breath or two, then not breath for maybe 15-45 seconds, then catch his breath and do it again. We've been noticing this for maybe the last couple of months. Also when we were in the hospital the last few times he would have several de-stats through the night. Doctors would always check him and say yes, he is dropping his stats, but seems stable. She agreed to order a sleep study basically just to shut us up and get us to stop talking about it... When we got the call to schedule it, it was booked all the way out to May! We had them put us on a cancellation list, and last Tuesday morning we were called and asked if we could come that night, of course we said yes even though it meant Ethan would miss one of his last 2 days of school before 2 weeks off for spring break... That's a LONG time for him to not be in school:)
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| Loving his doggy. |
We got up to the sleep lab in the evening, and I saw this as a perfect opportunity to have Jet stay the night at the hospital for the first time. This was a planned short visit, just perfect for him to get his feet wet! We've been focusing much of our training with him on accepting strangers. It's typical for people not to walk up and pet a service dog, and Jet ignores everyone when we're out in public so it's not always seen, but he really doesn't like people. He is nothing like a lab who happily comes up and wags his tail to be petted, he stands away and ignores people, and if you approach him instead of him coming up to you he backs away. The trainer we work with has suggested that unlike most working dogs, we actually encourage people to come up and pet him and give him treats, so while in the hospital we were working on it. While in the waiting room of the sleep lab there was another little boy there, maybe 7 or 8 years old. I was beyond shocked when Jet got up and walked over to this little boy and set right in front of him and licked his face. This is so far away from his normal behavior. He cuddled with this boy and let him love all over him, not much different than he does with Ethan. It turns out that this boy has autism, and somehow Jet picked up on something that told him he was needed there. His mom told me he was completely non verbal until they got a dog that totally brought him out of his shell. It's really amazing the things dogs can do just with their presence!
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| Pics of Jet at training. |
Once they got him back they hooked him all up. They use some EEG leads, then put leads all over his body and face, and tape oxygen tubing to his face. He's such a trooper. No child I've ever met his age would sit there and not complain for an hour while his entire body was wired up and wrapped up. He's such a good boy! Jet fell asleep on his bed, and eventually Ethan got to sleep as well. When he woke up in the morning the tech came to unhook him and told me he needed oxygen in the night. I asked why and he told me he really couldn't tell me, only the doctors can go over results, but "not to worry", and "it's often normal".... I should know better by now then to trust those words.
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| Jet hanging out with Ethan! |
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Not 20 minutes after leaving the hospital I got a call from a nurse. She said they still couldn't give me any results, but it does seem that Ethan does need to be on oxygen and we would be getting a call from a health care company to set up a delivery. I was told he needed to be on it at night, or anytime he was sleeping... But no one wants to tell us why! The health care company came and delivered everything, one huge oxygen canister, and 4 smaller ones for travel and gave us a quick run down on how to use it. He actually had slightly more information than we had been given. He said all he knew is that his oxygen had gotten as low as 83% during the night. Anything under 93% is considered dangerous. So there we were. For the next week we called every single day, multiple times a day to try to get answers as to why we had him on oxygen, and no one could tell us anything because certain people have to sign off on results, but those people can't give results, yadda yadda yadda... We were trying to figure out how to stop him from strangling himself on the tubing. Things got really bad when Mike was woken up in the morning to him choking. I was out in the living room awake already. The tubing had slipped off his nose and around his neck and somehow his legs were pulling down on the tubing and he was choking. Thankfully Mike did wake up and was able to untangle him. It took about 15 minutes before he was breathing well again. That was the end of it, we weren't putting that thing back on him until we knew if there was more of a risk of him not breathing at night, or choking himself.
The next day we did get more answers, but still not all of them. His average oxygen level while sleeping was between 90%-91%, with drops down as low as the 83%. Also he was doing the breathing thing we had been seeing. He was doing this approximately 5% of the time, and in children normal is considered less than 1% of the time. The people in the sleep lab suggested he has a new MRI (his first was done after he had had maybe 5 seizures, and a year and a half later he's had over half a million so I imagine some damage could have been done), and we see a pulmonologist. So finally, 2 days later, our neurologist finally felt she could pick up the phone and call us back. She calls just to tell us there's nothing we can do and we need to call our pediatrician to go over the results. Mike asked her about repeating the MRI and she said even if it did show damage there's nothing we can do about it so why repeat it? Hmmmm, maybe it would be good to know? Obviously our frustration with her is very high right now.
Our amazing pediatrician got us in last minute yesterday. She told us if anything like this ever happens again, and for a week we are sitting with no answers we are to call her and she will take care of things. We're so lucky to have her for a doctor. She randomly calls out of the blue just to check on Ethan, and always makes time to see us even though she has a very busy schedule. She went over the rest of the results with me. Yes, his results were abnormal, and his O2 was very low during the night. Even in her office it was only at 93%. He also had irregular breathing quite frequently during the night. She described it much the same as the way newborns breath when they sleep, breathing fast, then slow, then pausing. This is not normal past the newborn stage. She also said there were frequent periods of apnea, and the type he was having was coming from the brain. She said he absolutely needs a new MRI, no questions asked, quite a difference from our neurologist! They need to see what changes may have happened in his brain that might be causing this. She is getting the MRI set up, and getting us into a pulmonologist. She kept apologizing for how we had been treated and said it was unacceptable! We just love her:)
So for now I guess that's where we are. He has to stay on the oxygen for an indefinite amount of time now. That's just his luck though I suppose. They say any seizure under 5 minutes is completely benign, but Ethan's aren't typically that short. He's had 10, 15, even up to almost 20 minute long tonic clonics. Not only that but he's been in status for days at a time before. I worry what damage it has actually caused, and I guess we will see soon with this new MRI.
And just for anyone that doesn't know, March 26th is epilepsy awareness day. Next Monday wear purple to honor those living with epilepsy, and spread awareness! And I leave you with an adorable squishy puppy pic, and one of spring fun in the warming days to brighten your day:)
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UPDATE 5:45PM - Things quickly turned bad this afternoon. He had about a dozen violent drops, followed by a long and violent full out tonic clonic. He still isn't acting quite right. Let's hope this was just a fluke, and not a change:(
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| Jet comforting Ethan before it got really bad. |
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