ACK! Small vents
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| Mon, 02-20-2006 - 1:31pm |
First, furniture.
After 12 or so years, 6 moves, 2 dogs who chew and fur and kids, we have decided to get new living room furniture. We are moving the old LR furniture into the family room where the REALLY OLD furniture is (AKA - freebies we have collected over the years and missmatched together some I have re-finished, or covered, you get the idea) and the REALLY old furniture is being donated.
WELL - here is the vent. Mike is having a royal caniption over giving away the old nasties. Won't even hear of it. I am doing it anyway but this will be a problem for a while. Why can't any change be easy!
And here is the other vent. You all here know (or most of you do) the history I have had with Mike and Meds. It was a bad thing. I respect anyone who has made the choice for meds for thier kids but it isn't someplace I am willing to go anymore. Well, another friend of mine who has kids who are BP and AS is pushing the med issue today again. She also often pushes that she thinks Mike is BP which he isn't. It isn't that she is trying to be really pushy. For the most part she is a really nice lady and good friend but she sees things only from her POV. She really thinks I should take Mike and get him medicated again. I realize Mike is difficult but I have pretty much accepted that he isn't going to be typical. That I can't medicate him into fixed and that even with all the meds we tried the best we found was no better than no meds and often they were worse. So then why give meds. Just a minor vent thingie.
Thanks for listening.
Renee


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Renee,
I can't stand when other people think they can solve your problems for you. My MIL was here for the weekend and noticed that Ella's skin was really dry. I told her I've tried every cream known to man to help but nothing has worked. She called me this morning very excited(I'm laughing just thinking about it) to tell me she thinks Ella's tactile defensiveness is due to her dry skin!!!ROTFL
As far as meds go I'm right there with you. I think if you have a child who is out of control and is a danger to themselves or others, medication then is an option but if you have a child who really is only responding in a negative way due to sensory overload etc. meds should always be a last resort. I watched my sister be medicated from the age of 8 and at no point did anyone ever suggest one on one style therapy with her. From the start medication was the first and only choice. She spent much of her childhood in a kind of fog(her words) because she was so medicated.This was in Ireland over 25 years ago and the medication had much stronger side effects then but I just remember so clearly how out of it she was all the time.Medicating your child cannot be an easy choice to make for any parent and I can understand why it is a must for some but for me,it's just not an option.
Teresa
Teresa,
just an aside: my tactile defensiveness is elevated when my skin is dry, so although cream is not a cure: it can help (esp. if you take the opportunity to deep massage her during the application)
Renee,
I KWYM abotu the furniture and meds. It is very difficult for me to get Peter to part with anything. It does help to iunvolve him in the process a little: to come help pick out new furniture, or to help move the old stuff to go to 'a poor family who has no furniture and are very sad'.
The meds thing: I get it every now and again, but I just very firmly say we have considered and rejected the possibility. I have been waiting for someone to call me on it now that I am on Adderall myself, but no-one has :( (I'm spoiling for a fight! LOL)
-Paula
visit my blog at www.onesickmother.com
Renee,
Sorry about the whole changing furniture thing. Nathan doesn't like to part with things either. You should see his room! I don't think we've ever gotten rid of anything major...so it will be interesting to see how he reacts!
It's real irritating for other people to tell you what to do about your own child...especially when they don't even have a clue! I have the opposite problem though. Nathan is reserved....so I have a difficult time even CONVINCING people that he's autistic. I'm a crazy, overprotective mother---who has no idea what she's doing!!!
michelle
Teresa,
I just had to tell you this....I got some advice from a dermatologist, on what works great for dry skin. It works great for me...I even use it in place of chap stick. It's called Aquaphor, made by Eucerin. It's like vaseline, same texture....but has other ingredients too. It comes in a jar and also in tubes. Doesn't cost alot and it's over the counter. I've used it on the boys too. I even told my sister about it, and it's been working great for her AND her son too.
michelle
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YEA!! about the new furniture. Have you picked it out yet. How fun. I got a new couch last yr and I still love it. I hope mike gets over the old stuff soon.
Samantha
Already bought and paid for. We do combat style shopping now.
I am ROFL about having him help pick it out. Yup he is with us and yup we tried to involve the crew but Mike mostly was just interested in finding out the bounce-a-bility of each different sofa in the place. He was having an "I look very special day". We were looking for our groucho marx glasses. Got a few stares that day but when I said to the guy helping us "We need to hurry, our son has some special needs" I wasn't questioned and they did rush us through and didn't try to sell us extra's so it had it's advantages that time. I was EXHAUSTED though.
I would lean over and say "Mike, you need to use your words" or "Mike do you need to go outside and take a break for a minute" and he never even heard me just kept bouncing, making noises and doing lines. We were quite the site. What I wanted to say was "Hey MIKE! Buddy! wanna act normal for me for about 10 minutes?"Fortunately they turned on a movie which held his attention for about 10 minutes, but it was "Miracle" and he lost interest way to quickly.
Oh, we got a nice dark leather sofa, chair and ottoman and some dark wood coffee table and end tables. Very contemporary/mediteranean type style. I am excited. Went for leather for cleaning and fur purposes though the dogs will be killed if they go near my new sofa.
Renee
I went and ordered furniture today too!
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Risperadol is one of the meds we didn't try. not for lack of a doc wanting to, but because of my concerns with the 2 most common side effects. 1) Tardive Diskonesia - a movement disorder with severe tics that can come from long term use of antipsychotics like risperadol. This is of particular concern to me because both the kids already have movement disorders by way of multiple tics. Mikes tics were were on stimulants so I felt he was at increased risk for TD, and 2) Increased appetite - and not only the concern of weight gain. Mike is weird and obsessive about food as it is. It has to be at the right time. He has to have 3 meals a day. he has particular other peculiarities about it. He also has always seemed almost diabetic in his reaction to food, when he is hungry his behavior goes into the toilet. The thought of his appetite being increased that badly really concerned me with increased behavior.
We tried meds from the time Mike was not quite 5 until he was nearly 9 and we tried a ton of them. The "not working" took on many different looks. Some seemed to help some but other side effects were worse. I can give you the list as I recall it.
1) dexadrine (stimulant for ADHD) appeared to work at first for a few months, but soon he began to have horrible anxiety, mood swings and crashes. He would be coming off the med right around leaving kindergarted and he would literally scream at me and hit me all the way home for an hour daily. He started having problems in school too and was better off the med than on.
2) Tried slow release dexadrine and it wasn't taking effect or working well enough for school. Increased the dexadrine and added a quick release dose to jump start it. Still same behaviors as above.
3) Added Zoloft to dexadrine for anxiety - he became REALLY hyper!
4) Wellbutrin (added to dexadrine since dex had actually worked for a little while) and it helped a tiny bit but he was still melting down regularly and crashing alot.
5)Strattera - That doc recomended the Strattera med study. It wasn't even approved by FDA yet so we dropped all current meds left that psychiatrist and joined the strattera study for 9 months. He was dx'ed ADHD at this time though ASD had been mentioned alot. 1/2 way through the study one of the study docs convinced me to have him evaluated for ASD again. Strattera only worked really for one week and it was a week he was off school. Sometimes it took the edge off but not enough to make a difference.
6) Luvox -that appeared to help for a while again with anxiety and OCD stuff anyway. Still problems in school and teacher kept begging for ADHD meds. He was starting to have loads of trouble in school and luvox just didn't help enough.
7) Concerta -started concerta which the teacher liked but he quickly became more withdrawn, moody and anxious and aggressive starting at home then at school. Tried a couple dosage changes and dc'ed it after a month.
8) Clonodine - added clonodine somewhere in here. It cause ups and downs all day long but was pretty good in the middle of the 4 hour cycle. But that was maybe for 1 hour, other than that it was horrible. So he was put on the patch for it which helped his mood but he got HORRIBLE welts and rashes from the patch. We were moving it around every couple days and his body was covered in welts. So we stopped.
9)Luvox still- Started having increased difficulties. I learned that kids on Luvox or similar with ASD's sometimes have a bad reaction to it after a long while. He was on it for a year at that point. Started to be very aggressive at home and at school requiring fairly regular restraints.
10) Mellaril -talked to doctor about dc'ing luvox. She didn't want to because it seemed to help some previously. Instead added Mellaril. Mellaril made him doped up and not my son. He was on it 3 days when I found out that it can cause heart attacks and it was stopped. It is an old school strong med in the same class as risperadol. Risperadol was created to be a less side-effect heavy version of mellaril.
11) Depakote - went to a psychiatrist who wanted to hospitalize Mike. Didn't want to dc luvox either. He was restrained in her office that day. She added Depakote saying she thought he may be BP. within 3 days of depakote he was crying for hours at a time. Within a week his behavior was horribly worse, he was depressed and crying frequently or melting down more. I called the psychiatrist and she didn't call me back. When she did 2 days later she still wanted me to keep him on that med and wouldn't listen.
At some point in there Mike started having Hives regularly that no one could understand why they were or where they were coming from.
At that point(after depakote) I weaned Mike off ALL meds, put him on a sugar free diet, game him supplements, and haven't been back to a medical doctor with him since. I go to the psychologist I mention all the time. She has a wholistic approach to intervention too and specializes in ASD. She is not against meds and does support them when needed, but prefers and supports natural and wholistic approaches if you can.
Well, that is what I can remember of our meds experience. I know there were more we tried too but those are the ones that stand out. More info than you probably wanted.
No one can say I didn't give meds a good honest effort. I understand that it works for some and I am truly happy for them. But it doesn't work for Mike and I just want to slap anyone silly who starts in on me with meds for him. Sure I would like it if meds could help him but they don't.
Renee
What is risperadol? I have heard a lot of people on this site talking about it but don't know what it's used for?
Teresa
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