RE: Medications

July 17, 2012

Those are serious drugs. What do you hope it will do for him?

July 17, 2012

Our son currently takes three medications – low doses of each, but without them, he was really not able to function. They all deal with anxiety and aggression. If you want to speak off list, I’d be happy to go over what worked/what didn’t work for him. Abilify did not help him at all; in fact, when he was on it, he wound up needing to be restrained at school. I was totally against drugs, but then I realized that if he had a physical issue, there wouldn’t be a question. I wouldn’t withhold insulin or asthma meds, so why withhold something that would help with chemistry issues? Since he’s been on them, we’ve had to play around quite a bit to find a happy place, but right now he is able to (mostly) self calm and enjoy things that he used to not be able to do. Huge difference in his life. Also, where are you in Texas? If you are in the Houston/Galveston area, I can recommend my son’s psych. She has been excellent. We went with her because his pediatrician suggested we see a specialist for meds, and I’m quite happy we made that choice. She knows all the newest info and has been able to really make a massive difference in his quality of life. From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of Sent: Tuesday, July 17, 2012 8:24 PMTo: Texas-Autism-Advocacy Subject: Medications What experiences does anyone have with medications such as Abilify and the like? We visited with our son's psychologist today and she said we should speak to our pediatrician and consider this step. I have been fundamentally opposed in the past, but if this is what it takes to help we will do this. I just want more input as this scares me. Thank YouNo virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2197 / Virus Database: 2437/5137 - Release Date: 07/17/12No virus found in this message.Checked by AVG - www.avg.comVersion: 2012.0.2197 / Virus Database: 2437/5137 - Release Date: 07/17/12

July 17, 2012

,

I have been fundamentally opposed to medications as well, but after several years of ABA my son still has some degree of hyperactivity. The key is finding a psychiatrist who is responsive to your child. Our pediatrician would not prescribe the medications. We went to one psychiatrist who prescribed Vyvanse, which made my son go crazy. The doctor simply "modified" the time the medications were given until I finally told him that Vyvanse was making my son cry and get headaches and we "were done". Next he told me that we "had" to have a QEEG, which I am now understanding to be a very expensive test that is relatively worseless. After the QEEG the doctor prescribed Intuniv. When we got up to 3 mg my son started exhibiting significant anxiety issues. The doctor argued with me and said that was not one of the side effects. I sent e-mails to two chat groups

of parents and found that they too had experienced anxiety as a side effect to Intuniv. Again, after seeing the effects for a while I told him that we "were done" and asked what he wanted us to try next. The next thing was Clonidine, which again seemed to have a side effect of anxiety.

We stopped all meds, but my son was still hyperactive. I decided that maybe a psychiatrist was not the right doctor so we went to a pediatric neurologist. I will be brief, but bottom line was that prescription of medications to help with hyperactivity was not his speciality and we could only get appointments every few months, which does not work when you are trying to optimize the dosages of meds.

I had given up and decided "no meds" until a doctor friend of ours saw my son at a birthday party and sent me a tactful note later saying that my son was "hyper" and needed some help. This time I sought advice from a chat group in Houston and was referred to Dr. . He has been great. His motto has been to assume that any change in my son's behavior is due to the medication, regardless of whether or not it is a "listed" side effect. We tried my son on Trileptal, but after a very brief trial, one week, when he became too emotional, we stopped.

We then tried 1 mg of Abillify daily, which is half the normal dose. After a week, we visited him again, and after telling him that my son is more focused but seems a little too "out of it" some times, we are reducing the dose to every other day.

The bottom line is that I don't like meds either, but sometimes you have to try something. Based upon my experience the key is finding a good psychiatrist who is responsive and is really conservative in terms of what they prescribe. Dr. takes that approach.

I was hesitant to try Abillify, but my son in responding well. The vocal stims are down, the more typical language is up, the focus is up, and I truly think it is helping him. It has made him tired, and the daily dose seems to be too much, so hopefully backing off to every other day will be the right amount.

Just trust your instincts when you are working with the doctors. If something doesn't seem right, stop the meds, ask the others in the community for references, and find another doctor. I only wished that I had trusted my instincts sooner with the first psychiatrist.

Ruth

To: Texas-Autism-Advocacy Sent: Tuesday, July 17, 2012 8:24 PMSubject: Medications

What experiences does anyone have with medications such as Abilify and the like? We visited with our son's psychologist today and she said we should speak to our pediatrician and consider this step. I have been fundamentally opposed in the past, but if this is what it takes to help we will do this. I just want more input as this scares me.

Thank You

July 18, 2012

I am against prescription medications unless they are absolutely warranted. That would mean that the child absolutely cannot function or the parent cannot control the child. If the medication is need in order to keep the child in the home with the family as opposed to being institutionalized, then by all means....

I made up my mind not to do psychotropics (unless it came that my son became self injurious or seriously agressive to the point of not being able to be in the home) when he was three and his dev ped said he would never get any better and that I should institutionalze him immediatly and just " get on with your life. "

Of course I refused, and then she said, " Well, then...if you can just hold on until he is a little older, I have drugs I can put him on that willmake your life easier. " Of course this angered me, and I told her I was not interested in making my life easier but making the quality of my son's life better and I stormed out. Every thing this doctor said my son was NEVER going to be able to do, he can already do at the age of 12.5. the only exceptions to date are drive a car, go to college, live on his own, and get married.

For these we have time. Christ didn't leave home until he was thirty.I made up my mind not to put my son on these meds for many reasons. One is that I beleive it was the drug companies who damaged my son. I beleive they are notorious for giving a drug which then causes another condition or state of being so that they can then prescribe another drug and so on -- so there is a wealth of profit for them there. It sickens me to have to give a nickle to those who poisoned my child, and so I don't do this unless absolutely it becomes necessary. He had to be on steroids for a considerable time thanks to the damage done to immune system from vaccines. I had no choice as my son has to be able to breathe.

But since the institution of the AC Protocol and including adrenal support, my son has not had to take a steroid. He has needed Xopanex from time to time, but usually this is a sign he needs more adrenal support. The AC Protocol has improved his immune function beyond our wildest dreams.

In the early years of his regression, my son could be aggressive and self injurious. He would throw himself up against the wall so hard he would fall down. He was given to tantrums where he hit, bit, and kicked me. I dealt with these using an ABA type approach to change the behavior. For us it worked. I learned that food intolerances had a direct effect on his behavior, kept a food diary, and eliminated the offeding foods. Still accidents can happen, and about three years ago he got an offending food and changed into Dr. Hyde, had a tantrum and tried to choke me.

This taught me that with him I have to be extremely careful about food. It has never happened since. He has bad days like any other kid but he has not been self-injurious or physically aggressive since.

However that day did scare me, and so I know if it were a common occurrence and I could not find a way to change these things, I would give my son a drug if it would keep him at home. I cannot bear the thought of my son winding up in an institution. So each parent has to make that decision based on their circumstances.

I am happy and do feel blessed that I never had to put my son on psychotropics. Doctors did suggest it for the hyperactivity and the stimming, but I rejected it. For us we felt these should be considered only when not doing them would put our son or us at risk (or others at risk) of bodily harm. I would exhaust every natural means of finding the root cause of what is going on before resorting to a drug that will merely cover up the problem and not heal it. That is just our thinking, but no one can judge another parent for deciding to do so. Each parent knows his own limits and what their child may need and what the parent can handle.

My own opinion is to try every natural thing that can bring about an actual healing process. For me, I just cant give another nickle to people I believe are inherently evil if I can find a better way and bring about actual healing.

These drugs carry with them myriad side effects, and some are dangerous, so simply be fully informed before making a decision.

July 18, 2012

who were your other doctors that you tried and described below?Sent from my iPhone