Saturday, September 19, 2009

Siezures and doctors from hell for my kiddos

Yesterday was not so good.

First we took Olivia to the Opthamologist that we had taken Stephen to when he was first diagnosed. Back then he put dilating drops in Stephen's eyes and then wondered why he couldn't get near him to do an eye exam. Maybe because he was 2 and has Autism and after having those wretched drops put in his eyes everything looked even freakier than it already did. The guy was a butt. Nothing had changed when we took Olivia there yesterday. She has already been seeing my eye doctor for her yearly exams for the past couple of years but the geneticist that diagnosed her with Segmental NF-1 insisted we take her to see him. She wanted him to look for the Lisch Nodules and optic gliomas.

He walked into the exam room where I was seated with my hubby and Olivia was in the exam chair and said "How are we today ladies?". My hubby shot me a look and said to me under his breath,"I'm not the one wearing the pink shirt." He was very curt and without asking our permission quickly put the drops in her eyes and shooed us away to the waiting area where we waited for the drops to kick in. He did this to every single kid in the place. After looking at her eyes he said everything looked fine and her vision test was fine. He then told us that we could follow up with her regular doctor. This inflamed me! This guy's office is a half hour away and in the city I won't drive in so I had to make the appointment for a Friday when Pat could drive. Our regular eye doctor is five minutes from my house and isn't a jerk like this guy.

So her eyes were still dilated when she went to bed last night. Hate those drops.

So we went to BJ's after her appointment and got home and did some relaxing until Stephen got home. Everything was going fine until about 5:30, a half an hour after he had his seizure meds. He was sitting in his chair in front of the couch where Pat was sitting and they were watching "The Cat in the Hat". Suddenly Stephen put his hands over his ears and Pat called over to me, I was sitting at my computer in the next room and could see Stephen. Stephen then started to rub his earlobes. Something wasn't right with how he was acting but because of his Autism I wasn't sure if he was just doing this stuff because of his sensory issues. I got up and went over to him and he started touching his throat and gasping and clearing his throat and I was starting to think this could be the beginnings of a seizure.

I brought him into the bathroom and figured if it was a seizure he would start throwing up. He didn't. He started picking at his collar and turned slightly blue. I told Pat to check the time. If it lasted 5 minutes or more than we would have to give him the Diastat. Normally he would throw up and turn blue and go limp and be unresponsive until he came out of it. I went to lay him down but his body was stiff and Pat had to grab his feet and lift him up while I held him under his arms and we lowered him to the floor. While we were lowering him his eyes were going to one side. He didn't lay his head down easily and I grabbed a towel off the rack and put it under his head. All we could do was sit there and watch and tell him everything would be ok. He picked at the rug and we kept trying to get him to respond to us by talking or somehow indicating that he was coming out of it. About 1 minute before we would have to use the Diastat he started to repeat words back to us when we spoke to him.

We picked him up from the floor and had him sit on the couch. He started to fall asleep which is always what he wants to do after a seizure.

I called the doctor's office and requested a call from the doctor on call. He called me back and I told him what happened. He said it was definitely a seizure (tell me something I don't know) and I told him that the reason I was calling and concerned was that he has never had a seizure like this one. He said this would be considered a convulsive seizure because he was moving uncontrollably (smacking his lips, picking at his shirt and the rug). I found this unsettling. This might mean that there is a different part of a brain having seizure activity. When he was diagnosed with Epilepsy it was with complex partial seizures which is different from convulsive. I didn't go into these concerns with this Neurologist because I can discuss this with his regular Neuro on Monday. He recommended upping his dose of meds from 6 ml. to 7 ml. which I am comfortable with. I also told him that we had just seen his Neuro for a check up and hadn't gotten his levels checked and he recommended getting it done in two weeks right before a dose to see how low his levels are going.

I don't think it's any coincidence that he had a seizure a half hour after his evening dose. He last had a dose increase over a year ago when he had his last seizure. I am curious to see what the Dr. says about the fact that this was a different kind of seizure.

Have any of your kids had different kinds of seizures?


StatMama said...

I promptly "fire" doctors who act like the one you had the unfortunate experience of dealing with. I don't give a hoot how talented they are - if they can't treat me and my family with a bit of respect, they don't need my business. Doctors work for us. We pay them insane amounts of money to treat our conditions, and I think treating is like human beings is equally important.

I'm sorry about the seizures :( I'm hoping that the difference in type of seizure does not necessarily mean additional focus points in the brain. I have only minimal knowledge of these types of disorders, so I have no insight to offer. I hope everything is okay.

Casdok said...

Yes C has 2 different types of seizures, but as yet we havent got to the bottom of it all.
Fingers crossed for you.


Our boys both have complex partial seizures, and boy is it hard to figure out. Especially when one is nonverbal.

We have the same problem with our eye dr. What a putz!

When Ryder has his eyes dilated by those drops--his eyes remain dilated for 1 week!

Good luck, hope things are better now.

Hartley said...


I just stumbled onto your blog today (and ironically during the same time I found StatMama's blog too--go figure) and wanted to comment.

First, my oldest son had the screening at the eye doctor for neurofibromatosis back when he was around 3 (it was negative, but he still has some of the physical indicators; cafe au lait spots, and a bio brother dx'd)--and we had the SAME issue--asshole doctor and ridiculous eye drops. But in our *lucky* (note scarcasm here) case the drops didn't work right the first time, because my son's eyes were so "dark" brown they wouldn't dialate enough (What?!?) and we had to do them TWICE. If I remember correctly too, they stung his eyes, and this was NOT something he wanted to do a second time. My son has a huge level of "compliancy" that was taught by brute force during his time with his birth parents (he is adopted from foster care) and handled this just until the split second we were through the office door threshold. Then MELTDOWN. Poor thing--reading your post makes my blood boil with anger for those damn doctor's that don't seem to understand their patients. GRRRRR!

I sincerely hope that your son has a GREAT neurologist that he normally sees that can get to him on Monday. I can't imagine how scary that is for you, or the amount of worry you must have.

My thoughts are with you and your kids. Hang in there.