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?

Thursday, September 10, 2009

I'm on a mental vacation....

To keep me from going mental! I'm just exhausted mentally. I already have a brain that never stops running off on tangents and likes to jump from one task to another and when you add any other strenuous mental activity to its already hyper nature it gets REALLY TIRED. I swear the older I get and the more time I spend alone the more I wonder if the sensory sensitive, people avoiding person I have been the past year is who I have always been.

I have been through many phases in my life. I spent many years starting in junior high and through high school trying to find friends and figure out where I fit in. I never fit in. I did sports, poorly but got social interaction from being involved in them. Plus, I have always enjoyed the sensory input of being physically active. I had very poor social skills but managed to make "friends" in different social circles. I still preferred to be alone. I went to a very liberal private college and went wild! I made many friends but again never really felt like I fit into any particular circle COMPLETELY. I was very sensory seeking in college and in my twenties. Lots of people and lots of noise were exciting and interesting to me. I think I was running and running hard away from things that bothered me about myself. I was a mess.

When Stephen was diagnosed with Autism at 18 months we had people in and out of the house every week day. I had to take him to play groups for social therapy. I had no choice but to interact with people. I was also still working at this time and forced to deal with people. Once I became pregnant with my daughter and became a full time stay at home mom I seemed to slow down. I started to enjoy solitude like I did as the shy quiet child I was before my teens. I was still making a friend here or there but never really had total acceptance from them. I also felt like I said and did the wrong things when we interacted. Once I was at home all the time and wasn't distracted by all kinds of people and noise and running around I rediscovered the recluse I was growing up. I discovered that I liked being alone and threw myself back into being creative. I taught myself how to knit and was always trying new crafting materials and started scrapbooking. I got back into taking photos like I did when my dad got me interested in photography in my teens.

Now, I hate to leave my house. I prefer to only interact with my friend Jenn and my family. They are the only people I can be myself with and I don't feel the need to analyze everything I said and did after every social interaction with them. I like quiet unless I'm listening to music in the car or watching a tv show or movie. I'm becoming more sensitive to noises that I don't like. Especially high pitched or repetitive noises. I freak out over mess, disorder, germs and clutter. I like being at home where I can control my environment. I love working on my various projects, obsessions really. I know none of this is "normal". And I finally don't care. This is me. This is what I like and how I prefer to live my life.

Back to why I need a mental vacation. So as you can see, I have a low threshold for foolishness and mayhem. I like things quiet, clean, organized, logical and predictable.

We have had too many appointments in the past 2 months between Olivia and Stephen and the various check-ups and specialists they both have needed to see. After my accident last November I hate driving or riding in our car. Anywhere. Just leaving the house, riding in the car and going some place where there are people to deal with stresses me out and drains me mentally. Going with my hubby definitely makes it easier : ) God bless him. He understands and tells me to schedule appointments on Fridays so he can drive and go with me. Plus, it keeps in in the loop of what is going on with the kids and all their stuff.

I like getting new cool tech stuff but hate having to set them up and learn how to use them and get stressed until they become a routine part of my life. In one month we bought a 4 handset phone (sick of missing and dropped calls on our cells at home), a new computer for Stephen, a router to set up a wireless network for the 3 computers in the house and the Wii. We bought one router that sucked and had to bring it back after spending hours trying to get it to work and even called the manufacturer which was a waste of time. Pat took it back and got a different brand that is great and working just fine : ) The printer that came with Stephen's computer was a piece of crap that wouldn't work and Pat took it back and was told he had to exchange it for another one and couldn't get a refund because it was part of the "package". It still sits unopened in its box in the basement with the $33 cable that had to be purchased separately, of course. Stephen's computer was easy to set up but it has Vista and needed to have some things set up on it. Works great but it was something new, so stressful for me. We had to move his very heavy bed and his book case which meant moving all his books so he could sit on his bed and watch movies on his computer. Of course, we just move his glider rocker! It was still worth moving everything because his room looks better that way. The phones were easy to set up. However, I still have yet to complete putting all the numbers in the directory....

There were lots of back to school freebies at various stores so lots of running around and leaving my house and dealing with strangers and their lovely noise and smells and attitudes. Love the freebies but hate what it takes to get them.

My garden did pretty well but the tomatoes fell victim to blight. My flowers are finally looking gorgeous now that is hasn't been raining cats and dogs for a week straight. Speaking of rain, our basement flooded a handful of times and that was a pain in the tush mopping up an inch of rain each time. Sometimes it would flood at midnight when I would much rather be sleeping.

I loved having Olivia home over the summer but she is overstimulating. She is a great kid but is very social and loves talking and interacting and jumps around and runs around and makes messes. My son wasn't home during the day most of the summer but had a terrible time once again in summer school. Just knowing he was miserable all day and dealing with some of the behavior that he would bring home was stressful. I wasn't able to go to the gym ALL SUMMER! I had no routine, no order all summer. Wonder why I am in need of a break.

I have had a million medication orders and consents to fill out for school for both kids. Insurance and fuel assistance renewal forms. School info forms for emergencies and allergies and on and on.

We are still getting this place organized and getting settled in. We just painted Olivia's room this past weekend. I will be posting those picks on my other blog if you're interested.

Now I am trying to transition every one's wardrobes from summer to fall and figure out what is too small and needs the next size up. More shopping, which means more running around (unless I get lucky and find it online) and all that driving and people etc. etc. And of course I sell anything worth money on ebay to pay for all the new stuff they need. That requires sorting and organizing and washing and photos and listing and shipping.....

I went and bought a monthly/weekly planner a couple weeks ago to try and help me get some kind of order and routine back in my life. If it isn't written down I will forget it.

Sorry to vent but this is why I haven't blogged much. I'm worn out and overwhelmed. I hate to complain and try really hard to be positive because if I don't laugh I will cry.

So far there are NO appointments for October. Yay!!

If you don't see a blog post for days or weeks it's because I am trying to be the ringmaster of my own little circus and I'm too busy or tired to bother telling anybody about it. Or when I get a break I'm on facebook tending my virtual farms. I know I'm such a nerd but I'm ok with that : )

Friday, September 4, 2009

Olivia's Neurology appointment

We went to Olivia's first Neurology appointment for her Segmental Neurofibromatosis this morning. She agreed with the geneticists diagnosis but agreed with me that the missing pigment could be unrelated and referred us to a dermatologist. She also was concerned as well about the lump on her back and wants her to have 2 MRIs. More appointments hopefully=more answers.