Scary Monday

Had to rush the little guy to the ER yesterday because he had continued clusters of spasms and in between seemed to be having other types of seizures. It scared the living daylights out of me and I really didn't know if it would ever end on its own. Worst thing I've seen yet. Probably not a good sign.

So we are now on clonazepam along with the Vigabatrin and Oliver is also taking miralax to help with constipation. So the meds just keep piling up. The clonazepam is supposed to be a short term thing to see if it keeps the seizures away for a couple of weeks and then we'll wean off and see if they come back. If so, they are going to max his Vigabatrin to 150mg/kg (currently on 125mg/kg) and see if that helps. The neuro that came to see us in the ER said if it's going to work, it'll work by 150mg/kg, so it's scary to be so close to that upper limit and still be seeing seizures (worst seizures yet). Sounds like they don't think the hyps will go away with meds and we will just have to wait until he's 18-24 months and he will hopefully outgrow that pattern but then he'll be on to other seizure types. The good news is there are 21 medications to treat "seizures", so hopefully once he moves on from Infantile Spasms we can roll through the medication lineup and find one that works for him. In the meantime we will keep trying to max the vgb or stack another med on top of it to keep the seizures away and just keep hoping for a miracle with the hyps on his EEG. Since he is neutropenic (his absolute neutrophil count is under 300) he will never be able to do ACTH. They believe that he might outgrow the neutropenia but probably not anytime soon. The keto diet will probably not be an option as well because of the CDG, but if things get bad enough with the seizures to the point where vgb plus an add on aren't working , I might push for that.

Once the seizures stopped he was a trooper at the hospital, got his iv in with 2 sticks and got some antibiotics just in case he has some kind of bacterial thing brewing. His ability to fight bacterial infections is severely lowered because he's neutropenic and the neutrophils are the part of your white blood cells that fight bacterial infections.

Tomorrow he starts daycare. I am SO nervous because we don't have control of the seizures, so he's going to be having them at school. I am worried they won't recognize the seizures and tell me about them, or they will call me every time he cries thinking it's a seizure and I'll be running out of work all day long. Beyond the seizures I am so nervous about him getting bacterial infections and falling ill constantly. it'll mean lots of ER trips and IV antibiotics. But it's affordable, and I think the stimulation of other children will be amazing for him. Plus, his big brother goes there every day and it would be nice for them to be at the same school. We'll give it a few weeks and see if it works out.

Jason and I both had birthdays this weekend. Unfortunately he spent his birthday in the ER with me and Oliver and we didn't have time to make a birthday dinner and open presents. We are going to try again tonight!

6am seizure wake up call

Waking up to the sounds of your baby screaming out in pain is an awful way to wake up. Even more so when you recognize his very distinct cry, that only means one thing....seizure. When you rush out of bed to grab him and hold him until it passes and wish with each spasm that you could somehow transfer all the seizures out of his body into yours, you realize that life just isn't fair. I had no idea how helpless I would feel as a mom to not be able to fix my child. A kiss on a skinned knee, some ice for a bloody nose, a joke to cheer up a grumpy mood, a piggy back ride when they're tired of walking. I can do those things. I can fix it. I can't fix this. Despite my phone calls to try and increase his medicine, add a medicine, something, anything. Despite my research into alternative therapies. Digging and searching for the magic potion to make this all better. Knowing that Oliver will face a lifetime of seizures and other health complications overwhelms me like an 800 lb weight on my head. He is only 7 months old, he never even got a shot at a normal life and with each seizure I am reminded just how much we have left to battle against. It is far easier to take it day by day when those days are seizure free. I have cried more tears in the past 2 months since his initial diagnosis of Infantile Spasms than I ever have in my 29 years of life prior to that day. Have we really been battling this for 2 months now? It seems like such a short and long amount of time all at once.

One bright point in my day is the following email I received from Aetna this morning, looks like we're heading to Minnesota:

At this time, Marc Patterson, and the Mayo Clinic, both
participate in your Aetna health plan. 
You are not required to obtain preauthorization.

Is it time for a 2nd opinion?

Finally got a call from the nurse at the neuro's office. He doesn't have a plan. He doesn't want to do anything different right now, and it's really upsetting. Oliver has had 2 seizures in the past 4 days. I would consider that a bad sign, along with the fact that his EEG shows no improvement since March 30th. The neuro wanted to try ACTH again but we can't, because Oliver's severely neutropenic and because he currently has an ear infection. So until his levels get better (if they get better) and he doesn't have any other issues going on, we can't do the ACTH. He doesn't want to increase his Vigabatrin dose either. He had an ear infection 2 weeks ago and didn't have seizures like this during it. So I don't really think the seizures are being caused by the ear infection. Maybe they are caused by teething? who knows? I just want them to stop. I wish someone could offer us another option, because I am running out of patience. I am trying to take it day by day but it is just too hard. I feel like there could be something out there that can help Oliver but nobody is trying to find it. Isn't that the job of the medical professionals? To offer a plan? an option? How can keeping him on the current dose of medicine be the best option considering his EEG hasn't cleared and his seizures are coming back?

Oliver goes to school!

We heard back from hematology on Friday. While Oliver is still severely neutropenic (His absolute neutrophil count is 274, should be up over 1500), the dr said she wouldn't prevent him from going to daycare. We just have to be careful and cautious and call if his fever goes over 101 at any point. Since he's likely to get sick a lot at daycare that will probably happen often, which will result in a trip to the ER and a blood test. if his counts are low they will likely start antibiotics since the issue with neutropenia is that he'll be unable to fight bacterial infections very well. He should fight viruses just fine though.

He had a seizure yesterday morning, right as he woke up. happy mother's day to me! It was hard to watch but we quickly moved past it and started prepping for our brunch. We got to see tons of friends and had a great time eating and talking. Tobin ran into a fence face first and had a bit of a cranky day from all the excitement but hopefully it was still fun for him. Waiting to hear back from the neuro about increasing Oliver's Vigabatrin dose. Hoping we can and that it will keep the seizures away again. I don't know what their plans will be for clearing his EEG but I sure hope they have one and that it works. Of all the things Oliver has to face in his lifetime, I'd love to move past the Infantile Spasms at some point if we can!

New Shades

Oliver got some new sunglasses today. We noticed last time we went to the park and it was really sunny, he seemed to shut his eyes quite a bit, and his pupils got really really tiny. I think this will help so he can be out and about this summer. And he looks SO cool!

day by day

We are truly taking things day by day after another seizure struck. It brought me back to reality. I had enjoyed a long month (one whole month) without having to watch Oliver have a horrible screaming cluster of seizures. But , as our family's luck would have it, on Cinco De Mayo he woke up at 11pm with an awful one. This was the first one in a month and so hard to see as we thought maybe, just maybe we were on the path to seizure freedom. Time will tell in the next few days if that was an isolated incident or if it's time to start trying different meds, increase his Vigabatrin dose or something else. Oliver was scheduled for an EEG yesterday since he had been doing so well with decreased seizure activity. Of course, the night we are trying to sleep deprive him for the EEG, one strikes. He has had an ear infection so maybe that had something to do with it? who knows. His seizures, when they first started, were every 24 hours approximately. So we've gotten past that point now without a 2nd one, but I am so nervous that more are coming and it will be time to take action.

He did really well at his EEG yesterday. We're not EEG specialists, but Jason was looking at the screen while the test was being done, and Oliver definitely still has a hypsarrthmia (I can never spell that right). His brain wave patterns were all over the place. No official report from the neuro so we don't know if there are other seizure types present as well or if the hyps has improved at all. We'll wait and see what they say and what they want us to do about the return of the seizures.

Oliver also had a hematology consult. They are going to try and get to the bottom of the low red and white blood counts for us. First we do blood tests (we should hear results sometimes in the next few days), and then if those don't tell us anything, we move on to a bone marrow biopsy :(

Last night we got home a little before 6pm and Oliver fell asleep, slept through his Vigabatrin (swallowed the meds while sleeping!) and kept on sleeping until 11pm! poor little tater tot. We all went out to eat down the street at our local bar and grill and had a really nice dinner. Oliver slept the whole time, Jason and tried some different beers and Tobin had a really fun time driving his firetrucks all over the table. I am now realizing that we have to take advantage of these times and moments. Oliver is small and portable and a good sleeper when napping. We should get out and about as much as we can. I can only imagine the logistics of traveling with a child in a wheelchair, or going out to eat with a kid who cannot sit up on his own.

This morning I went to Tobin's school for a mother's day event. He painted my fingernails (you can imagine how good they look), then I painted his nails. Then he did my hair, gave me a massage, and rubbed some lotion into my hands. I felt very pampered. We have a fun weekend coming up. Some friends will be coming by on Sunday to celebrate mother's day with us and have brunch. I am very excited for a cup of coffee and chatting with friends while the kids destroy the house, it all sounds very "normal" and that's just what I need!

We are still waiting on EI to get us started with therapy for Oliver and doing private PT in the meantime. It's expensive though so I don't know how much longer we'll be able to keep it up. I am going to try and find a therapy center that takes Aetna in network that is just as good as the one we currently go to, but it is bittersweet as we all really like the current therapist and she does a great job with Oliver. With daycare/nanny costs coming up soon we have to make cuts somewhere. In my fantasy life we win the lottery and both stay home with Oliver :)