Is anyone trying L-acetylcarnitine (aka acetyl-l-carnitine; aka ALCAR)? If so, where are you getting yours? The study that was done in Italy used 500mg twice a day. I am finding it in capsules and in powder form through healthstores. Has anyone gotten a prescription for it?
Has anyone tried Neurofeedback? Postive, negative, neutral experiences appreciated. If you feel more comfortable e-mailing me vs. commenting, please feel free to do so. Admin @ basicallyfx.com
Thanks!
We sure had a great time here and we kept very busy, it’s going to take a couple posts to catch up!
Saturday was dedicated to finally finishing up the outdoor landscaping and planting our vegetable garden. I had a very bad feeling about Saturday because Monkey started off in a very whiny mood. He was constantly on the verge of tears for the first few hours for no apparent reason and of course those were the hours we had to spend running around gathering supplies for the lawn irrigation system!
His mood finally picked up after we got home and started playing in the yard. Duhdee moved two sprinkler heads so that they wouldn’t flood the garden since our veggies need much less watering than our lawn does. Monkey was very helpful, he loves using tools so he kept a close eye on Duhdee’s progress. He would grab one of Duhdee’s screwdrivers and find something to “fix” himself.
When he was tired of helping Duhdee he would help me with whatever I happened to be working on at the time. I repotted our strawberry plants and just generally dug around in the dirt. We found a few worms in our flower beds and decided to relocate them to the new garden. Monkey was very gentle with the worms. It was just so cute to watch him cup these itty, bitty worms in his hand and carefully walk across the yard.
The last outdoor task of the day involved planting all the little seedlings we started in our basement under growlights 6 weeks ago. We are now the proud parents of 16 tomato (4 varieties), 4 cucumber, 2 pepper, 2 basil and 2 parsely plants. We were all pretty pleased with our efforts but none moreso than Monkey.
Seriously, this boy of mine can not get enough dirt. I actually caught him giving himself a dirt SHOWER prior to planting the veggies in the garden. He would put a big handful of dirt on the top of his head and then tip his head down so the dirt would fall past his face. Obviously, Saturday ended with a LONG bath. He was mostly skin colored by bedtime which I’ll claim as a victory.
When he was younger Monkey really hated it when I wore my hair down. As soon as I removed my hairclip he’d bring it to me and mime how to put my hair back up. He would put the clip in his mouth, just the way I do, then twirl his hands in his hair and then put the clip to the back of his head. It was quite cute and the message was clear. If I refused to put my hair up he would make sure that he didn’t accidently touch my hair. It was obviously a sensory issue for him.
Recently, though, he has been encouraging me to let my hair down. If I stand so that my hair is hanging away from my body he will walk through it and let it trail over his face and he’ll tell me “hair” and giggle. I’m not sure what has brought on this sudden change in him. I’m just glad I can finally wear my hair down again and still get hugs!
(This is an FX Memory, from before I knew I was a carrier, read Part one here: A migraine saved my life.)
After my intake evaluation it was a relief to finally be told that they wanted to admit me. My parents were totally shell shocked by how badly I was doing, I am very good at hiding this sort of thing and I come by it honestly. At one point I remember justifying why I had not been able to reach out for help by relating this story.
My grandfather has broken his leg twice in his lifetime. The second time he broke it he walked around on it for 3 days before he decided to see a doctor, can you imagine? Anyway, the doctor put a cast on his leg that ended just above his knee. My grandfather wore the cast for two DAYS and then cut it off himself. He said that he’d walked on it for 3 days without a cast and he didn’t see any reason why he couldn’t continue to do so. A few years later my mother broke a bone in her foot. She hobbled around for 3 days before she went to see a doctor. When she told her father the story his reply was “That’s my girl!”
This is just one example of how my family deals with pain and this lesson was passed along in many other ways as well. It was really ingrained into me from an early age that we should all just buck up. It’s not to say that my family is cold, we’re just your average Yankees. Stoicism is a virtue, until it almost kills you and then everyone will tell you what a dolt you were to hide your pain in the first place. They’ll still proudly tell the story of how you got along up until that point though!
My first few days in the hospital were remarkably unhelpful. I was tired and I was cranky, to put it mildly. Spending days in a locked ward with mandatory group therapy did not agree with me and I saw no reason to hide that fact. I refused to participate in therapy and I still wasn’t eating since I still didn’t think I deserved to eat. I woke up just around 11 PM on my 3rd night feeling very dizzy. My heart rate was erratic. I tried to get out the door to get help and I collapsed. I hit my chin on the door handle, I still have the scar.
I’m not sure how long I was there but it couldn’t have been very long, they did room checks every 10-15 minutes and they would have found me blocking the door, but it felt like a lifetime. Eventually, I was able to stand upright and get the door open. I started down the long hall to the nurses station, I had to lean against the wall to walk. Then everything went black. I’ve passed out before, from stage fright and fevers and it had always been a gradual event but not this time. This time it was just lights out.
The nurses were alerted to my problem when they heard my head hit the floor from some 30 feet away. I only remember bits and pieces of what happened. I heard one of the nurses give my blood pressure reading and it was really low (something over 40), I heard another one say “Girly, you’ve got to EAT!” and that’s about all I remember until they put the IV in my arm in the ER. That woke me up but good. I had quite a long time to sit and listen to the nurses fuss at me. They got into a lot of trouble over all this too, I still feel badly about that.
After I went back to the unit they gave me one more day to sleep and be grouchy and then they started to really push me. They turned me into a pet project of sorts. There are lots of people who cycle in and out of the psych unit there and I’m sure it’s the same at every hospital. There are some people who for, whatever reason, can’t come back from their mental illness and they didn’t want to see me become one of them. There was no need of it in my particular case, it would have been pure stubbornness on my part if I didn’t get better. Medications and therapy could make me better but I had to at least make some effort.
Ultimately, I was able to take advantage of the tools they were offering me. I was diagnosed with Major Depression – Single Episode. With drug therapy and counseling everyone thought I’d stabilize and be able to come off the medications completely. When I was discharged, after a week of inpatient treatment and six weeks of outpatient treatment I felt healed. I continued private therapy for 6 more months and then weaned off my medication.
I did great from that point until my son was diagnosed with Fragile X years later.
To be continued…
I remember when I was little my mom used to brush my sister’s teeth and every once in a while she touch the back of her tongue with the toothbrush and make my sister gag. She’d laugh. It was one of those things that shouldn’t have been funny but kinda was. Like seeing someone trip, as long as they don’t get hurt.
I guess I’ve inherited my mother’s inappropriate sense of humor.
Last week, as we were preparing for Monkey’s birthday party, we pulled out all sorts of party supplies to see what we needed to buy. We found a couple bags of balloons and we blew one up for Monkey to play with. We also blew one up and, instead of tying it, we would let it fly around the room. Monkey thought it was pretty darn funny, except when it “chased” him.
After watching the balloon spin around the room, he ran over to pick it up. He grabbed the now limp piece of rubber in his hand and…gagged. He ran to Duhdee and handed it to him and the whole time he was gagging. Duhdee blew the balloon up again and let it fly. Once again Monkey ran over and picked up the deflated balloon…and gagged.
I’m probably going to hell for this but I handed him the balloon two more times to watch his reaction. I stopped when I thought he might actually puke. Yesterday I discovered that this toy causes the same reaction.
He just received one shaped like a puppy for his birthday. I should totally get rid of it, right?
Monkey points to his chest and say “Meh.”
He’s really enjoying being four so far. He has enjoyed the attention this year more than ever before. We skipped the activities that we know will upset him, like singing “Happy Birthday,” and pushed him a bit on the things we thought he might enjoy, like opening gifts. We were really pleased with how well he’s done!
Yesterday was the big, family party at my parents’ house. Monkey loves going there and since it’s almost always a party when we visit he is not at all phased by the crowds; whereas here, he gets upset if there are too many people in the house. He did so fantastic!
He played with his older cousins, he tickled Auntie Kristie, he let my second cousin (who he doesn’t see often) help him up after he tripped and even let her hug him and he sat at the table with Papa (his great grandfather) and they shared cake and ice cream. He moved in and out of rooms, interacted with people who approached him and sought others out for help or fun.
One of the biggest surprises yesterday was that he opened all his gifts. He has never done this! We thought we were doing good at Christmas when we convinced him to rip a few small strips of paper off his gifts but he did so much better yesterday. Initially, I had thought we’d just let him open things when the mood struck and we wouldn’t make it an event but we ended up giving it a shot and I’m glad we did. We gave him lots of time and everyone made sure he had plenty of space but he stayed with Duhdee and I at the center of the room and opened them all. He did the classic kid thing of tossing aside clothing but he was very excited about all the toys. It was great!
Everyone commented on how much he has changed recently and we definitely see it too. Sometimes progress is so painfully slow that we miss it but not lately! Lately he changes on an almost daily basis and we’re all having so much fun.
by Monkey’s BIRTHDAY!
How did it get so late so soon?
It’s night before its afternoon.
December is here before its June.
My goodness how the time has flewn.
How did it get so late so soon?
-Dr. Seuss
Photo courtesy of Megan George.
Happy 4th birthday little man.
Monkey has a great love of balloons as most kids do, right? We always seem to have one of those party store, disposable helium tanks in our basement and we’ll occasionally run down and blow up a couple balloons for him. Sometimes, we’re too lazy. Sometimes, we’ll just blow up a balloon and call it good enough.
Usually this is fine with Monkey, he will use the balloon as a ball. He throws it around and still finds it amusing enough. This week, though, it has proven to be a bit of a disappointment for him. He just wasn’t satisfied with tossing this balloon around, so he found a way to make it fly.
Balloon, meet ceiling fan. I wish you the best of luck.
I wonder how many times it will withstand the beating before it pops. Our youngest dog is going to fuh-reak when it does. Poor Barley.
When you have a 2, then 3 and now nearly 4 year old who does not talk you can get some crazy ideas. I’ve said more than once over the last few years that if he dropped the “F” bomb as his first word, I’d throw a damn party.
Now, that didn’t happen. He’s picked up some other more socially acceptable words along the way fortunately. This move from “non-verbal” to “verbal” is so slow and painstaking though that I sort of haven’t been giving much thought to my tendency to use, shall we say, “colorful*,” language.
Friday, we were in the truck headed toward school (and the marvelous triumph I posted about below) and I saw one of my neighbors. My neighborhood is filled with odd ducks but this man stands out. He is bat shiznit crazy. He thinks people are picking on him when they let their dogs poop in the (city owned) strip of grass in front of his house…even though they PICK IT UP. (There’s lots more but he rants about this one frequently.)
Anyway, I see crazy neighbor numero uno walking down the street, headed for work looking like…well…like hell. Unshaven, jeans, old flannel shirt, dirty vest. Now, this guy works in commercial real estate, so this is not exactly his typical “uniform.” So, I said to my darling husband.
“Oh, man, he looks like hell!” and the conversation immediately turns to another subject until…30 seconds later…we hear our darling Monkey pipe up in the back seat.
“Hell!”
My response? Naturally, I say “Oh, shit!” Fortunately, he’s not making the “S” sound yet so that one is a ways off.
*OK, fine, I swear like a sailor, happy? I’m screwed.
