Wrapping Things Up

Unnnamed piece done for a friend who requested a purple and yellow fleur de lis.

Well, I called and scheduled an appointment with the neurologist. They couldn’t get me in until The second week in October, so I’ve got a little more time to get prepared. I’m waffling. I’m scared to death of the idea that Charlie could get hurt and it would be MY FAULT. It would be different if my husband and I shared in these decision more equally, but for the most part, he’s scared too and wants me to pull the trigger.
I have found what I consider another option: I’m considering asking the doctor if we can try Keppra. Doing a little research I found this web site: Crazymeds. It’s not written by doctors or anything, but that’s kind of why I like it. It’s written in language I can understand and you can tell that the author is pulling info from a number of sources–not just the write-up from the drug company. It’s still in the process of being created, so not every medication has a full write-up, but it you or your child is taking something that affects their brain then this might be worth a look-see.
Ok, enough about Crazymeds–Keppra! Keppra seems to have less of that sleep-inducing effect that you hear so much about with anti-epileptics. I’ve also had at least two parents on here leave positive comments about Keppra especially when compared to phenobarb. The only real issue as I see it is that Keppra is only approved as an adjunct for most seizure types (needs to be taken with something else). Of course, we don’t even know if Charlie is actually having seizures–he’s just high risk–so who knows what the doctor will say about that. There are also regional issues that you just can’t account for–different parts of the country tend to favor different types of drugs. I guess I’ll just have to wait and see what the doctor says. Patience is not one of my strong suits.
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I’m also waffling on the Mother’s Day Out thing. I KNOW! I am so indecisive, right? Thing is, it’s not cheap. Also, it would take Charlie away from me for about five hours. I’m not sure if it would be a good thing–yay! I can get all my errands done! Or a bad thing–bah! that’s just more time where we’re not doing ABR or lessons. I am considering not doing MDO and instead getting Charlie into a monthly respite night. Basically, kids with mental or physical handicaps go to a church for three hours and sing songs, play games, and eat a meal. They are assigned a helper and everything. This would be good for several reasons: social interaction AND it wouldn’t interrupt the hours of the day when we normally have lessons/ABR. And I can’t deny the greatness of getting a Friday evening to myself once and a while.
I guess it would also be worth noting that Charlie social anxiety seems to be getting better. When we took him to the aquarium it was SLAMMED with kids and mommies and strollers and he did just fine. He just concentrated on the fish.
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I guess I’ll also comment a little on his physical progress since I know there are people who want to know about this stuff. Charlie can now climb an eleven inch step on his belly. He is also actively trying to push himself into a sit. He hasn’t mastered it yet, but the intention is there and so is the movement–he just needs to get a little more comfortable shifting his weight onto his right arm. A final, smaller, but still important improvement is that he is starting to use a pincher-style grasp when he plays with his puzzles. We’re inching along over here, and it’s all good as far as I’m concerned.
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I could go on and on with the updates, but I’ll give you a break now. I just wanted to add one final thing. Anat Baniel is a Feldenkrais practioner who broke off on her own and developed a whole practice working with children. She’s giving an all day web lecture online this Saturday. To go in person would be almost two hundred dollars. The web version will be fifty. Just something you could check out if you were interested.
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Comments

  1. Love the fleur de lis. What are you making it with?
    The medicine–I know that it must be scary, but I'm glad you're looking into it at least.
    The MDO–the respite night sounds like a better idea, at least right off the bat. Get Charlie used to time away from mommy first.

  2. A is on Keppra and it is working really well for him. Go with your gut and it can't hurt to try it. And you do deserve a MDO, you do so much, why not take some time for yourself, it will make you re-energized when you come back to Charlie!

  3. Katy,

    Am I missing something? Has Charlie had a seizure?

    I think it's a great idea taking a break. ABR will still be there when you come back.

    Take care,
    Jacqui

  4. Small Town Girl says:

    I think the evening thing sounds great. It won't help any with your errands, but it will give you a little down time and you very much deserve that!

  5. Nadine Hightower says:

    Do what you feel comfortable with. And do what is best for Charlie. Sometimes those two aren't always the same thing….It's not easy being a mom.

  6. I think taking a break is good. I bet Charlie will perk up off the pheno, and I understand how you feel. I sometimes wonder if Jude will ever know the feeling of being off medications, but I doubt it.

  7. Wherever HE Leads We'll Go says:

    I am very indecisive! I feel like I have to know all of the possible options before I make a decision – not always possible. Might explain why I take SO long to make decisions.

    I have no doubt that you will make the right choice for Charlie. Keppra has worked very well for Emily (and she doesn't take it with anything else for seizures). You will be ready by the time the appointment comes – just ask your questions, bring up your concerns and go with what you feel is right.

    As for the respite/Mom's Day Out – you need a break once in a while. And I bet Charlie would benefit from the social interaction and semi-independence.

    Glad to hear he is making good progress with his movement – he is amazing!

  8. I found you through Max's blog! I'm so happy about it! Cici is on Keppra, and doesn't have seizures (that I know of) and doesn't take it with anything else. She was on phenobarb after her accident, but it was causing liver damage so she switched to Keppra. Her EEG showed the "right environment for seizures" even if she isn't having any. Also, I am VERY interested in ABR – I may try to contact you. I'm not sure where to start, and I'm in CO, so, hmmmm. Also, I don't know what I would do without respite! Probably go nuts. If I'm not already there. Jenny (mom to Max 3.5yo, Penny and Cici – 21 month old ID twins, Cici has brain injury from choking accident).