Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 We had the same problem with my son. IVIG has helped him. We also recently started TSO therapy and that seems to be helping so far. You can google a story a father wrote about his son and aggressive behavior and how TSO helped him. To: BorreliaMultipleInfectionsAndAutism Sent: Sunday, April 22, 2012 9:00 PM Subject: clonidine and CBT Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma... Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 We have used clonidine for years, but only for sleep. My 75# son takes .15 mg nightly. Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma... Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 I am so fed up with ABA, that is my first thought. We are doing Son-Rise, I just came back from the maximum impact parent training and I can tell you our son has changed a lot on it. You can consider Son-Rise by taking a look at the webpage www.autismtreatmentcenterofamerica.org, it is just completely different from ABA and really helps on creating happier kids and parents, can't tell you enough good things about it. The first and most important step is attending the 1 week training, called Start-Up. It has helped us so much!!! I have 6 volunteers, me and my husband playing with him in the playroom 7 days a week for a minimum of 4 hours x day. It takes time though and lots of energy, but it is so worth it! My 7yo is a different, much happier kid and I have so much hope and peace of mind. They give you all knowledge of techniques to help your child and help him grow in all areas.One of the advice is NOT take your child to places he can't handle, but instead of being home just waiting for time when things get better, you are empowered to use this precious time in helping him go over the limitations he has. In other words, instead of depending from 3rd persons, you are able to take control of the situation and be real help for your kid. ABA might work for some, in our case, we did 5 years from it and didn't see any wows but increasing resistance, frustration and anger. SR is 100% the opposite to ABA and addresses the behaviours in a loving, comprehensive way.I wish you many blessingsIsaEnviado desde mi oficina móvil BlackBerry® de TelcelFrom: dgfindley@...Sender: BorreliaMultipleInfectionsAndAutism Date: Mon, 23 Apr 2012 01:00:06 -0000To: <BorreliaMultipleInfectionsAndAutism >ReplyTo: BorreliaMultipleInfectionsAndAutism Subject: clonidine and CBT Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma...Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2012 Report Share Posted April 22, 2012 Isaso wonderful to hear you are pleased with this direction you are taking.....Hugs, I am so fed up with ABA, that is my first thought. We are doing Son-Rise, I just came back from the maximum impact parent training and I can tell you our son has changed a lot on it. You can consider Son-Rise by taking a look at the webpage www.autismtreatmentcenterofamerica.org, it is just completely different from ABA and really helps on creating happier kids and parents, can't tell you enough good things about it. The first and most important step is attending the 1 week training, called Start-Up. It has helped us so much!!! I have 6 volunteers, me and my husband playing with him in the playroom 7 days a week for a minimum of 4 hours x day. It takes time though and lots of energy, but it is so worth it! My 7yo is a different, much happier kid and I have so much hope and peace of mind. They give you all knowledge of techniques to help your child and help him grow in all areas. One of the advice is NOT take your child to places he can't handle, but instead of being home just waiting for time when things get better, you are empowered to use this precious time in helping him go over the limitations he has. In other words, instead of depending from 3rd persons, you are able to take control of the situation and be real help for your kid. ABA might work for some, in our case, we did 5 years from it and didn't see any wows but increasing resistance, frustration and anger. SR is 100% the opposite to ABA and addresses the behaviours in a loving, comprehensive way. I wish you many blessingsIsaEnviado desde mi oficina móvil BlackBerry® de TelcelFrom: dgfindley@... Sender: BorreliaMultipleInfectionsAndAutism Date: Mon, 23 Apr 2012 01:00:06 -0000To: <BorreliaMultipleInfectionsAndAutism > ReplyTo: BorreliaMultipleInfectionsAndAutism Subject: clonidine and CBT Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma... Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2012 Report Share Posted April 23, 2012 Just some ideas - but maybe things you have tried or heard of already, Check with your DR. Has your son had IVIG before? No therapy works if your child is miserable, so I do understand, and they cannot learn when their so sick. This has been going on so long, youre son needs relief. High dose, Tryoptophan work up to 3,000 mgs ( max dose) IP6 work up slowly to 3,000 mgs ( max dose) High dose Clostrum - given 4-6 times a day Probiotics oral IgG - 2,000 mgs ( max dose) Kava Kava - in liquid gel caps, by Giai brand - not sure of the dose on this one Combination of Golden Seal, Olive Leaf ext - caps, given 3 times a day depending on his wt. and size ( 1/3 dose of what adult dose is listed). incense 1-2 drops in a capsule at bedtime. LDM - 100 - check the files on how to use this. And do you have anyone to give you a break, that should be on the prescription list too. Thinking of you Allie > > > Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma... > Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... > > also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2012 Report Share Posted April 24, 2012 Not the first pharm I would try. Drs prescribed that for , stating that "he needed impulse control". Well we know now that he needed all these blasted bugs killed, without killing in the process. Conidine is a BP med. We went through a lot of them. It did nothing for him. I just answered this so long story short, I would think that an anti-anxiety, anti-depression, makes more sense. I hate pharm also and it took my son beating me up A LOT and even choking me for a while to change my mind. But I've put him on some meds that have really helped him 3 times now after trying abs....but I know that I can wean him off after balancing him with biofeedback and with other things that I have incorporated into our protocol like Limu and a PEMF device that gets rid of the pain. SO what I'm saying is the meds don't have to be permanent. For my son, abilify, neurontin (the safest and non-addictive), and klonapin (anti-anxiety), have been life savers...but only after 2,5 months, I've been lowering dosages and weaning him off now. BUt when we really needed it, it was a life-saver (literally) and it gave him rest and peace of mind. -- Re: clonidine and CBT Just some ideas - but maybe things you have tried or heard of already,Check with your DR.Has your son had IVIG before?No therapy works if your child is miserable, so I do understand, and they cannot learn when their so sick. This has been going on so long, youre son needs relief.High dose, Tryoptophan work up to 3,000 mgs ( max dose)IP6 work up slowly to 3,000 mgs ( max dose)High dose Clostrum - given 4-6 times a dayProbioticsoral IgG - 2,000 mgs ( max dose)Kava Kava - in liquid gel caps, by Giai brand - not sure of the dose on this oneCombination of Golden Seal, Olive Leaf ext - caps, given 3 times a day depending on his wt. and size ( 1/3 dose of what adult dose is listed).incense 1-2 drops in a capsule at bedtime.LDM - 100 - check the files on how to use this.And do you have anyone to give you a break, that should be on the prescription list too.Thinking of youAllie>> > Hi all, well I am breaking down and considering clinidine for my 12 year old son after all these years of trying not to do pharma...> Head Psych at UCSF is recommending clinidine first for my son, has anyone used this on their children, reactions they had, affect it had good or bad, dosage etc would be greatly appreciated, I am really nervous about it but my sons psych symptoms have gotten so severe that we are homebound for past year, fears/phobias/startle response/OCD/rages are just unbearable... all the treatments so far for PANDAS/PITANDS (although I could do more antiviural somehow), lyme/bart/bab have not helped thus far and the antibiotics made these symptoms so much worse... > > also looking for good psych/therapist to help us with cognative behavioral therapy/emotional support for him/us... the 7 ABA programs we have had over the years have been useless in this area.> Quote Link to comment Share on other sites More sharing options...
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