Actually, that has been the question for about 9 years now.
I lean towards natural living and am generally anti-medicine, even over-the-counter. We’ve been so lucky with the infrequent seizures and not needing daily meds, I’m afraid that introducing a medication for something else might upset the balance.
I know a lot of parents with children affected by Angelman Syndrome deal with major seizure issues. I don’t know how I could do it. I can barely handle the couple seizures she does have a year.
Maddie’s behavior has just gotten so out of control. It’s one thing to be bad at school or bad at home, but to be bad everywhere is just too much.
I’m to the point where I feel its not fair to not try some medication.
Its not fair for her to always be in trouble or for her to always be so frustrated.
It’s not fair to her siblings and classmates to have to put up with her yelling and carrying on.
It’s not fair to me to have to be so strict with her. No swimming class. No TV. No snacks. No movie night. No favorite toys. I want her to like me! I want to be able to like her.
I know she is almost 12 and right at the start of puberty. I know the hormone changes pretty much make any teen chemically inbalanced.
We start with a doctor appointment asking for an assessment and prescription today. Keep your fingers crossed!
5 Comments
October 9, 2009 at 9:52 am
Praying for you and Maddie, and your decision. It is always a tough choice, and one that makes you wish someone else could make it for you. I know my sis feels that way about sleeping meds, for my nephew, it’s a love hate relationship. Maddie is your oldest, and first girl to go through this, so wanted to let you know that Caylee, my typical child, flipped out about everything at 12 years old! She was an emotional basket case, Jeckel and Hyde! It got so much better after the cycles began.
October 9, 2009 at 10:17 am
Good luck Emile. I hope you find a solution that works. Will keep Maddie in our thoughts.
October 9, 2009 at 10:27 am
Difficult descision, but yes at the end of the day if it is affecting Maddie’s life by restricting where she can go etc (as well as the lives of those around her) and no other solution has been found then I think medications have to be considered.
Dimitri has taken risperdol, but we took him off it after a few weeks as he seemed “rather than calmer. We came close to considering it again this summer, but for now things are running smoothly (although I’m not looking forward to adolescence)
October 10, 2009 at 9:42 pm
I feel your pain (((((HUGS))))). It’s a tough decision. We are going through this decision with our boys right now. They have Fetal Alcohol Spectrum Disorder (FASD) and drug exposure, and it’s at the point where, we can handle it, but would it be better for them to have better control of their actions and have better brain clarity??? They get in trouble constantly and I also, like you, want to be the nice Mom, not the B*@*h that’s yelling at them all the time, because that’s how I feel quite often. It also affects the other kids because it affects my mood, and they have to listen to it too. Would they like to remember what is said to them, yes. Would they like to think before they act, yes. Would they like to get a sentence out in less than a minute, yes. And like someone else told me, if they had diabetes, would I be against medicating them? Because it’s almost as serious of an issue. They said that I’d notice within days if it works and if it doesn’t we can change it or whatever.
I’m sure someday we’ll be at the same point with Peyton that you are with Maddie. Peyton likes to get into everything, pull hair, scream, etc. and we all think it’s so cute. Someday, when she’s Maddie’s age, it won’t be so cute anymore.
Anyways, you have my support in whatever decision you make. It’s a tough one, like many decisions we special needs parents have to make. These little people are counting on us and we don’t want to screw up. And these days you don’t know who you can trust because no two Dr.’s seem to agree on anything anymore, so that helps about as much as a kick in the head.
More (((((HUGS))))),
Jen
October 31, 2009 at 3:04 pm
Hey Em
It’s a hard decision. I tried to take Chance off meds because the side-effects were so terrible, but without them, his behavior is sooooo bad. I’ve contacted Darren Humphries and he’s got a contact with ASSERT in the UK that produced a 28-page booklet and DVD on dealing with difficult behaviors in Angelman. I’m waiting to see if I can get my hands on a copy. Have you seen it?