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a_mom
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14 Jan 2009, 12:03 am

My daughter is autistic, mod/sever MR, and epilepsy. Her behaviors are extreme and needs medication to try to control. She is nonverbal so I'm not sure how these meds are making her feel. Just going off of what others who have taken the meds have said. I hate having her on any, but can't control her without. Even with, when we go to a store, everyone in the store knows we have arrived. What I'm wondering is, what meds have others tried? With my experience with psychs in the past, they all kind of suck so put her on whatever I ask them about. I know there has to be a "cocktail" out there that works for her. Just need to find it!



jelibean
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14 Jan 2009, 12:19 pm

Hiya, my son is ADHD/DAMP actually! Temporal Lobe Epilepsy. His epilepsy is controlled with Topiramate and his ADHD with Phosphatidyl Serine. Old timers on here know I am a BIG PS fan! It appears to work exactly the same as Ritalin ONY IT IS NATURAL AND......no side effects! Very gentle, natural and QUICK. No prescription needed, whooohoooo. There have been quite a lot of posts and threads about it so if you need to know more, then just yell...........any excuse to talk about PS! Don't worry, there are over 3000 academic papers on it. Works beautifully and my son and I have been maintained on NOTHING else for 3yrs!! Whoohooooo! :lol:

By the way, my son was pretty uncontrollable...................in 20mins his life became calm after taking PS. Magic in a pot! Check it out :wink: GOOD LUCK X



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14 Jan 2009, 1:40 pm

a_mom wrote:
My daughter is autistic, mod/sever MR, and epilepsy. Her behaviors are extreme and needs medication to try to control. She is nonverbal so I'm not sure how these meds are making her feel. Just going off of what others who have taken the meds have said. I hate having her on any, but can't control her without. Even with, when we go to a store, everyone in the store knows we have arrived. What I'm wondering is, what meds have others tried? With my experience with psychs in the past, they all kind of suck so put her on whatever I ask them about. I know there has to be a "cocktail" out there that works for her. Just need to find it!

a_mom,
does/do her behaviors have any triggers,or is it definite random behavior?
as it is set off when enter a store,could she be reacting to sensory overload?

the meds really depend on the cause of the behavior,as some suit some types of behavior more than others.

am have autism [severe],borderline MR and TC epilepsy.
am also have what staff call 'challenging behavior' and get prescribed the maximum dose of tegretol ret*d for that as well as the seizures,it works-have been on it for years,but it does have side effects at the beginning of taking them,tegretol ret*d is a slow release version so it has less of the rush and less of the side effects that normal tegretol has [have been on them both],am got halucinations with normal tegretol which is supposed to be common,and it messed pitch in hearing-itd be going up and down pitch,and speed of sound would constantly go from slow to fast and back again,and the effect of normal tegretol makes feel very slowed down,zombie state,am find with tegretol ret*d dont have that slow down.

am recommend tegretol because it helps with many parts of autism,it doesnt remove them but it can dull severity,or stabilise,it has also brought on or improved speech in some people-it doesnt help am with speech though.

one that can help with rage/severe meltdowns/self injury is a beta blocker called propranalol,am get the slow release version of this,am find it doesnt help too much but it does take some of the severity away-the normal release may work better for those able to cope with it.

what sort of behaviors does she have?
does she headbang?


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a_mom
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14 Jan 2009, 6:35 pm

a_mom,
does/do her behaviors have any triggers,or is it definite random behavior?
as it is set off when enter a store,could she be reacting to sensory overload?

the meds really depend on the cause of the behavior,as some suit some types of behavior more than others.

am have autism [severe],borderline MR and TC epilepsy.
am also have what staff call 'challenging behavior' and get prescribed the maximum dose of tegretol ret*d for that as well as the seizures,it works-have been on it for years,but it does have side effects at the beginning of taking them,tegretol ret*d is a slow release version so it has less of the rush and less of the side effects that normal tegretol has [have been on them both],am got halucinations with normal tegretol which is supposed to be common,and it messed pitch in hearing-itd be going up and down pitch,and speed of sound would constantly go from slow to fast and back again,and the effect of normal tegretol makes feel very slowed down,zombie state,am find with tegretol ret*d dont have that slow down.

am recommend tegretol because it helps with many parts of autism,it doesnt remove them but it can dull severity,or stabilise,it has also brought on or improved speech in some people-it doesnt help am with speech though.

one that can help with rage/severe meltdowns/self injury is a beta blocker called propranalol,am get the slow release version of this,am find it doesnt help too much but it does take some of the severity away-the normal release may work better for those able to cope with it.

what sort of behaviors does she have?
does she headbang?[/quote]

My daughter craves sensory, so she tends to hurt herself to fulfill this need. She is a huge biter. She bites her hand and arms probably 10 X during an hour time frame. She bangs her head a lot. She will look for a hard object just to try and inflict the most pain. I did associate her mood with the biting and head banging. When her emotions are running, doesn't matter if it is good or bad, she will bite. If she is really raging, she will bite whoever/whatever is between her and her arms. I have been bite so many times. She will draw blood with these bites. the headbanging is typically when she is frustrated. Being nonverbal, that is often.
She also lets out with loud screams, reminds me of someone with terrets when she is doing this. It's like she runs super hot, or extremely cold. There is no middle ground with her behaviors.
Another thing is she is constantly on the go. Very busy. I can't keep up with her. She is always 2 steps ahead of me. For instance, she'll dump her drink on the floor. When I go to clean it up, she will throw anything on the island onto the floor, when I'm cleaning that up, she is grabbing a marker and coloring the kitchen cabs. This will take place in a couple minute time frame. Our behavior therapist is stumped with her behaviors adn trying to eliminate them. I am completely aware that a lot of what she does is just part of her disorder and accept that. I would just like to be able to sit and breath every so often! The meds she has taken in the past either leave her like a zombie, which I won't allow, or just doesn't affect her at all. Dr said she is amongst her 10% who meds just don't seem to work. She'd like for me to put her in a home on the weekends so I can have a minute, but I can't do that.
I am going to look up the meds mentioned and see if it is something she may benefit from. I find that just talking with other parents, I have been able to do a better job at suggesting meds to teh dr., than the Dr.s have done. With her last med change, I was told there was nothing else to try. Then I mentioned another drug a friend's child is on, and she thought it a great idea and my daughter is responding a little better to it.
Thanks for the responses! I really appreciate all the input!



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14 Jan 2009, 7:25 pm

sorry, double post - read below


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14 Jan 2009, 7:25 pm

My son is very sensory seeking in the way of touch, but he has trouble with other sensory matters, needing to avoid noise and light and the energy of too much going on around him. He used to sensory seek those, as well, but fortunately has learned not to. What one is attracted to is not the same as what is good for someone.

When is your daughter, as her natural self, most calm? That may give you clues as to how to adjust the environment so that you can worry a little less about adjusting her. What you will find talking here to those who are Aspergers and HFA is that sensory issues tend to be at the bottom of many behavior problems and that the best way to reduce those behavior problems is to reduce the sensory input. There are those who always wear sunglasses shopping, noise cancelling headphones when in a public environment, and so on. The strangest things can cause the problem: the sound of a heater, the flush of a toilet. Of course, the difficult part is that your daughter can't identify these for herself and can't tell you, so you will have to play a guessing game.

What I learned about my son is that he sensory seeks when it comes to touch because he needs that to know where he is the space around him. He has loose joints, and that condition prevents all the nuerons from getting from the sensory source (say, fingertips) to the brain. So he needs MORE in order to feel it. We're at a loss on how to manage that, however, but it sounds like your daughter has a similar need, and perhaps just understanding it may be a start.

My son is high funcitoning Aspergers so he hasn't needed any med's, and I can't help you on that. Just, perhaps, the window into what is going on inside might help. A little. Multiply it by 100 for your daughter, however, of course.

Best of luck. Wish I could help more.


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ster
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15 Jan 2009, 2:12 pm

every medication is different. what works for one person might not necessarily work for someone else. i have one child that takes seroquel for anxiety, and one child that takes Tenex & Geodon for anxiety......hubby takes alprazolam for anxiety.



DwightF
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16 Jan 2009, 2:29 pm

jelibean wrote:
Phosphatidyl Serine
...
By the way, my son was pretty uncontrollable...................in 20mins his life became calm after taking PS.

Interesting. Is it always suppose to work that fast? I thought the idea was to do with moderating level of certain fats and/or a source for the lipids themselves (we actually have a fair amount in our brain and gut membranes normally) and I pictured effect from that having a longer onset. Even over days, because even a can of baked beans will have a similar amount of phosphatidyl serine as what I thought a typical dose is? Is the hypothesis that it's something to do with it being more bioavailable in the supplement form?

Oh, and what dose (mg/kg or mg/lb) are you using. Do you have any links to materials on dosing levels?

I ask because my wife and I are making a decision this week about what to try first with our 6 1/2 year old next Thursday. He has a 4-day weekend, so it seemed like good timing and gives a fair amount of time to tweak dosage while he's still at school. He's in an amazing school situation right now but we are moving at the end of the school year and don't know where he'll go to school next year so we want to take advantage of that before we turn our lives upside down with a move.


P.S. I've only ever found a couple of prototype studies with ADHD that report good results but that's it. Nothing with a control group muchless a double blind. If you've got a link to one that'd be great.


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