Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Steph, Can you pinpoint this at all? How is he when he just wakes up? Does it increase throughout the day? stephaniesirr schrieb: > > > Just to let people know, we've done a four week trial of this and it > has done absolutely nothing at all. NO reduction at all in SIB, it > hasn't touched it. Only slight side effect increased appetite. So, > perhaps they'll use that as indication that Tom's SIB isn't " all in > his head). Very bad at the moment - beating the crap out of himself. > > tends to be mornings and evenings predominantly. Doing my head in. > (probably not doing a whole load for Tom's either) :-( > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 It varies . But often he wakes up full of smiles and then it's as if a switch is flicked, he's enraged, sib, 20 minutes, then crying, then just very flushed and exhausted. It's horrible. Morning and evening tend to be worst. He's still saying " light off, light off " (even when it is off actually) but then if it was migraine presume it would last longer than the 10-20 minutes that these do. But there is something visual in there definitely. Daytime, definitely calmer, working well at school and meltdowns there tend to be avoidant and brief. Not sure if it's linked to the whole waking up and winding down process as that's certainly when it's most likely to spring out of seemingly nowhere. He's taking adrenal support, and still on the risperidone, also probiotic, bit of zinc (occasional, we're all a bit low in zinc in this family). God only knows what condition his poor brain is in from the all the banging. But he has gained 3 lb in weight - probably due to the risperidone induced increased appetite (a side effect that we rather welcome). He's now a whopping 4 stone and his eleventh birthday is next week. But heaviest he's ever been which is a good thing Steph x > > Steph, > > Can you pinpoint this at all? How is he when he just wakes up? Does it > increase throughout the day? > > > > > stephaniesirr schrieb: > > > > > > Just to let people know, we've done a four week trial of this and it > > has done absolutely nothing at all. NO reduction at all in SIB, it > > hasn't touched it. Only slight side effect increased appetite. So, > > perhaps they'll use that as indication that Tom's SIB isn't " all in > > his head). Very bad at the moment - beating the crap out of himself. > > > > tends to be mornings and evenings predominantly. Doing my head in. > > (probably not doing a whole load for Tom's either) :-( > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Steph, In that 20 minutes, have you fed him? Reason for asking is that I have been spending some time on protein metabolism. I decided to look into this because my liver enzymes were skyhigh last blood test and my doc had prescribed a liver detox. it happens to be an amino acid ('orthinine asparate' somewhere in the urea cycle. It's worked wonderfully but since looking into this, I found that this cycle is to some degree regulated by the thyroid. so we come back to the thyroid again. You mention zinc. I regularly supp with zinc and I regularly have low zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is also related to thyroid. It's either high zinc with hypo or low zinc with hyper, can't remember-story of my life:-)) I am now a confirmed 'thyroid head' as per last blood draw so this makes sense to me. I can't remember where we left with thyroid and your son. Have you tested his basal temp first thing in the morning before getting up? It may shed some light on this..... stephaniesirr schrieb: > > > It varies . But often he wakes up full of smiles and then it's as > if a switch is flicked, he's enraged, sib, 20 minutes, then crying, > then just very flushed and exhausted. It's horrible. Morning and > evening tend to be worst. He's still saying " light off, light off " > (even when it is off actually) but then if it was migraine presume it > would last longer than the 10-20 minutes that these do. But there is > something visual in there definitely. Daytime, definitely calmer, > working well at school and meltdowns there tend to be avoidant and > brief. Not sure if it's linked to the whole waking up and winding down > process as that's certainly when it's most likely to spring out of > seemingly nowhere. He's taking adrenal support, and still on the > risperidone, also probiotic, bit of zinc (occasional, we're all a bit > low in zinc in this family). God only knows what condition his poor > brain is in from the all the banging. But he has gained 3 lb in weight > - probably due to the risperidone induced increased appetite (a side > effect that we rather welcome). He's now a whopping 4 stone and his > eleventh birthday is next week. But heaviest he's ever been which is a > good thing > > Steph x > > > > > > Steph, > > > > Can you pinpoint this at all? How is he when he just wakes up? Does it > > increase throughout the day? > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > Just to let people know, we've done a four week trial of this and it > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > hasn't touched it. Only slight side effect increased appetite. So, > > > perhaps they'll use that as indication that Tom's SIB isn't " all in > > > his head). Very bad at the moment - beating the crap out of himself. > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00 > > > > > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Sorry I forgot something really important. If the urea cycle is not working properly, you get ammonia. This is very toxic to bodily tissues. This build up 'may' be causing some problems in not only your son but in a majority of the kids. My daughter had a BIG problem with this pathway..... I remember how often she got up all right and then it was woefully downhill (drunken sailor, meltdowns, spaced out) throughout the day. This would correspond with a slow build up of ammonia. At the time she couldn't put 2+2 together, literally. JULIE GRIFFITHS schrieb: > > > Steph, > > In that 20 minutes, have you fed him? Reason for asking is that I have > been spending some time on protein metabolism. I decided to look into > this because my liver enzymes were skyhigh last blood test and my doc > had prescribed a liver detox. it happens to be an amino acid ('orthinine > asparate' somewhere in the urea cycle. It's worked wonderfully but since > looking into this, I found that this cycle is to some degree regulated > by the thyroid. so we come back to the thyroid again. > > You mention zinc. I regularly supp with zinc and I regularly have low > zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid > and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is > also related to thyroid. It's either high zinc with hypo or low zinc > with hyper, can't remember-story of my life:-)) > > I am now a confirmed 'thyroid head' as per last blood draw so this makes > sense to me. > > I can't remember where we left with thyroid and your son. Have you > tested his basal temp first thing in the morning before getting up? It > may shed some light on this..... > > > > stephaniesirr schrieb: > > > > > > It varies . But often he wakes up full of smiles and then it's as > > if a switch is flicked, he's enraged, sib, 20 minutes, then crying, > > then just very flushed and exhausted. It's horrible. Morning and > > evening tend to be worst. He's still saying " light off, light off " > > (even when it is off actually) but then if it was migraine presume it > > would last longer than the 10-20 minutes that these do. But there is > > something visual in there definitely. Daytime, definitely calmer, > > working well at school and meltdowns there tend to be avoidant and > > brief. Not sure if it's linked to the whole waking up and winding down > > process as that's certainly when it's most likely to spring out of > > seemingly nowhere. He's taking adrenal support, and still on the > > risperidone, also probiotic, bit of zinc (occasional, we're all a bit > > low in zinc in this family). God only knows what condition his poor > > brain is in from the all the banging. But he has gained 3 lb in weight > > - probably due to the risperidone induced increased appetite (a side > > effect that we rather welcome). He's now a whopping 4 stone and his > > eleventh birthday is next week. But heaviest he's ever been which is a > > good thing > > > > Steph x > > > > > > > > > > Steph, > > > > > > Can you pinpoint this at all? How is he when he just wakes up? Does it > > > increase throughout the day? > > > > > > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > > > > Just to let people know, we've done a four week trial of this and it > > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > > hasn't touched it. Only slight side effect increased appetite. So, > > > > perhaps they'll use that as indication that Tom's SIB isn't " all in > > > > his head). Very bad at the moment - beating the crap out of himself. > > > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - www.avg.com > > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > 09/09/09 06:53:00 > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00 > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 FWIW Just a suggestion. Our son's head banging decreased by about 95% when we stopped giving eggs. The protein in eggs apparently can be a problem if there is dust mite allergies according to our allergist. Also my own ocular migraines were completely eliminated with digestive enzymes. Kenny > > Just to let people know, we've done a four week trial of this and it has done absolutely nothing at all. NO reduction at all in SIB, it hasn't touched it. Only slight side effect increased appetite. So, perhaps they'll use that as indication that Tom's SIB isn't " all in his head). Very bad at the moment - beating the crap out of himself. > > tends to be mornings and evenings predominantly. Doing my head in. (probably not doing a whole load for Tom's either) :-( > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 > > > > > > > > Steph, > > > > > > > > Can you pinpoint this at all? How is he when he just wakes up? Does it > > > > increase throughout the day? > > > > > > > > > > > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > > > > > > > Just to let people know, we've done a four week trial of this and it > > > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > > > hasn't touched it. Only slight side effect increased appetite. So, > > > > > perhaps they'll use that as indication that Tom's SIB isn't " all in > > > > > his head). Very bad at the moment - beating the crap out of himself. > > > > > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - www.avg.com > > > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > > 09/09/09 06:53:00 > > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > 09/09/09 06:53:00 > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 In a message dated 10/09/2009 17:06:08 GMT Daylight Time, jane_hogan@... writes: Does anyone know of any kind of supplement that would calm a very hormonal teenager down????? I know this behaviour doesn't last forever, but it's quite draining, especially when he's almost as big as me! >>If you find something put me down for a vat of it................ Mandi x 12,14 and 15 year old boys......arghhhhhhhhhhhhhh bet girls are worse! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Believe it or not, carbonated water is good for ammonia build up. I make a home made soda out of ginger and honey. Simmer peeled and cut 6 inch piece of ginger in 3 cups water. Remove ginger pieces and add 1/2 cup honey until blended. I use this as a syrup and add to cold carbonated water to taste. The error in protein metabolism may be due to an overage of purine rich foods in the diet. My son had a large purine issue and for several months I had to limit his purine protein intake to an ounce per day for a small child. Purine causes the build up of uric acid. We follow Sara's diet, and Desorgher helped me with this. Meat, peanut butter, cauliflower and asparagus are all sources of purine. While I limited these proteins, I supplemented with Rice protein which has many important amino acids. It does not however have carnatine or creatine, so I would supplement with carnatine from time to time. Carnatine helps the fatty acids reach the mitochondria in the muscles. I believe the dilated pupils are an immune system response to something in his diet. What ever the culprit is, it may be causing a rise in his dopamine levels making him "high". Sharon From: JULIE GRIFFITHS <moppett1@...>Autism Treatment Sent: Thursday, September 10, 2009 4:23:27 AMSubject: Re: Re: Risperidone Sorry I forgot something really important. If the urea cycle is not working properly, you get ammonia. This is very toxic to bodily tissues. This build up 'may' be causing some problems in not only your son but in a majority of the kids. My daughter had a BIG problem with this pathway.....I remember how often she got up all right and then it was woefully downhill (drunken sailor, meltdowns, spaced out) throughout the day. This would correspond with a slow build up of ammonia. At the time she couldn't put 2+2 together, literally.JULIE GRIFFITHS schrieb:> >> Steph,>> In that 20 minutes, have you fed him? Reason for asking is that I have> been spending some time on protein metabolism. I decided to look into> this because my liver enzymes were skyhigh last blood test and my doc> had prescribed a liver detox. it happens to be an amino acid ('orthinine> asparate' somewhere in the urea cycle. It's worked wonderfully but since> looking into this, I found that this cycle is to some degree regulated> by the thyroid. so we come back to the thyroid again.>> You mention zinc. I regularly supp with zinc and I regularly have low> zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid> and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is> also related to thyroid. It's either high zinc with hypo or low zinc> with hyper, can't remember-story of my life:-))>> I am now a confirmed 'thyroid head' as per last blood draw so this makes> sense to me.>> I can't remember where we left with thyroid and your son. Have you> tested his basal temp first thing in the morning before getting up? It> may shed some light on this.....>> >> stephaniesirr schrieb:> >> >> > It varies . But often he wakes up full of smiles and then it's as> > if a switch is flicked, he's enraged, sib, 20 minutes, then crying,> > then just very flushed and exhausted. It's horrible. Morning and> > evening tend to be worst. He's still saying "light off, light off"> > (even when it is off actually) but then if it was migraine presume it> > would last longer than the 10-20 minutes that these do. But there is> > something visual in there definitely. Daytime, definitely calmer,> > working well at school and meltdowns there tend to be avoidant and> > brief. Not sure if it's linked to the whole waking up and winding down> > process as that's certainly when it's most likely to spring out of> > seemingly nowhere. He's taking adrenal support, and still on the> > risperidone, also probiotic, bit of zinc (occasional, we're all a bit> > low in zinc in this family). God only knows what condition his poor> > brain is in from the all the banging. But he has gained 3 lb in weight> > - probably due to the risperidone induced increased appetite (a side> > effect that we rather welcome). He's now a whopping 4 stone and his> > eleventh birthday is next week. But heaviest he's ever been which is a> > good thing> >> > Steph x> >> > > > >> > > Steph,> > >> > > Can you pinpoint this at all? How is he when he just wakes up? Does it> > > increase throughout the day?> > >> > > > > >> > >> > > stephaniesirr schrieb:> > > >> > > >> > > > Just to let people know, we've done a four week trial of this and it> > > > has done absolutely nothing at all. NO reduction at all in SIB, it> > > > hasn't touched it. Only slight side effect increased appetite. So,> > > > perhaps they'll use that as indication that Tom's SIB isn't "all in> > > > his head). Very bad at the moment - beating the crap out of himself.> > > >> > > > tends to be mornings and evenings predominantly. Doing my head in.> > > > (probably not doing a whole load for Tom's either) :-(> > > >> > > >> > > > ------------ --------- --------- --------- --------- --------- -> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - www.avg.com> > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date:> > 09/09/09 06:53:00> > > >> > > >> > >> >> >> > ------------ --------- --------- --------- --------- --------- -> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00> >> >>> > ------------ --------- --------- --------- --------- --------- ->>> No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Oh I forgot to mention oat meal has purine in it too! From: Sharon Schachte <sharon@...>Autism Treatment Sent: Thursday, September 10, 2009 9:41:26 AMSubject: Re: Re: Risperidone Believe it or not, carbonated water is good for ammonia build up. I make a home made soda out of ginger and honey. Simmer peeled and cut 6 inch piece of ginger in 3 cups water. Remove ginger pieces and add 1/2 cup honey until blended. I use this as a syrup and add to cold carbonated water to taste. The error in protein metabolism may be due to an overage of purine rich foods in the diet. My son had a large purine issue and for several months I had to limit his purine protein intake to an ounce per day for a small child. Purine causes the build up of uric acid. We follow Sara's diet, and Desorgher helped me with this. Meat, peanut butter, cauliflower and asparagus are all sources of purine. While I limited these proteins, I supplemented with Rice protein which has many important amino acids. It does not however have carnatine or creatine, so I would supplement with carnatine from time to time. Carnatine helps the fatty acids reach the mitochondria in the muscles. I believe the dilated pupils are an immune system response to something in his diet. What ever the culprit is, it may be causing a rise in his dopamine levels making him "high". Sharon From: JULIE GRIFFITHS <moppett1@btinternet .com>Autism-Biomedical- Europe@grou ps.comSent: Thursday, September 10, 2009 4:23:27 AMSubject: Re: Re: Risperidone Sorry I forgot something really important. If the urea cycle is not working properly, you get ammonia. This is very toxic to bodily tissues. This build up 'may' be causing some problems in not only your son but in a majority of the kids. My daughter had a BIG problem with this pathway.....I remember how often she got up all right and then it was woefully downhill (drunken sailor, meltdowns, spaced out) throughout the day. This would correspond with a slow build up of ammonia. At the time she couldn't put 2+2 together, literally.JULIE GRIFFITHS schrieb:> >> Steph,>> In that 20 minutes, have you fed him? Reason for asking is that I have> been spending some time on protein metabolism. I decided to look into> this because my liver enzymes were skyhigh last blood test and my doc> had prescribed a liver detox. it happens to be an amino acid ('orthinine> asparate' somewhere in the urea cycle. It's worked wonderfully but since> looking into this, I found that this cycle is to some degree regulated> by the thyroid. so we come back to the thyroid again.>> You mention zinc. I regularly supp with zinc and I regularly have low> zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid> and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is> also related to thyroid. It's either high zinc with hypo or low zinc> with hyper, can't remember-story of my life:-))>> I am now a confirmed 'thyroid head' as per last blood draw so this makes> sense to me.>> I can't remember where we left with thyroid and your son. Have you> tested his basal temp first thing in the morning before getting up? It> may shed some light on this.....>> >> stephaniesirr schrieb:> >> >> > It varies . But often he wakes up full of smiles and then it's as> > if a switch is flicked, he's enraged, sib, 20 minutes, then crying,> > then just very flushed and exhausted. It's horrible. Morning and> > evening tend to be worst. He's still saying "light off, light off"> > (even when it is off actually) but then if it was migraine presume it> > would last longer than the 10-20 minutes that these do. But there is> > something visual in there definitely. Daytime, definitely calmer,> > working well at school and meltdowns there tend to be avoidant and> > brief. Not sure if it's linked to the whole waking up and winding down> > process as that's certainly when it's most likely to spring out of> > seemingly nowhere. He's taking adrenal support, and still on the> > risperidone, also probiotic, bit of zinc (occasional, we're all a bit> > low in zinc in this family). God only knows what condition his poor> > brain is in from the all the banging. But he has gained 3 lb in weight> > - probably due to the risperidone induced increased appetite (a side> > effect that we rather welcome). He's now a whopping 4 stone and his> > eleventh birthday is next week. But heaviest he's ever been which is a> > good thing> >> > Steph x> >> > > > >> > > Steph,> > >> > > Can you pinpoint this at all? How is he when he just wakes up? Does it> > > increase throughout the day?> > >> > > > > >> > >> > > stephaniesirr schrieb:> > > >> > > >> > > > Just to let people know, we've done a four week trial of this and it> > > > has done absolutely nothing at all. NO reduction at all in SIB, it> > > > hasn't touched it. Only slight side effect increased appetite. So,> > > > perhaps they'll use that as indication that Tom's SIB isn't "all in> > > > his head). Very bad at the moment - beating the crap out of himself.> > > >> > > > tends to be mornings and evenings predominantly. Doing my head in.> > > > (probably not doing a whole load for Tom's either) :-(> > > >> > > >> > > > ------------ --------- --------- --------- --------- --------- -> > > >> > > >> > > > No virus found in this incoming message.> > > > Checked by AVG - www.avg.com> > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date:> > 09/09/09 06:53:00> > > >> > > >> > >> >> >> > ------------ --------- --------- --------- --------- --------- -> >> >> > No virus found in this incoming message.> > Checked by AVG - www.avg.com> > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00> >> >>> > ------------ --------- --------- --------- --------- --------- ->>> No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 In a message dated 10/09/2009 20:24:32 GMT Daylight Time, peter_2_@... writes: GABA and 5HTP >>Not helping here.............. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 In a message dated 10/09/2009 20:42:33 GMT Daylight Time, moppett1@... writes: Or get him into an epsom salts bath before he's knows what's happening >>not helping much either........... Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Does anyone know of any kind of supplement that would calm a very hormonal teenager down????? I know this behaviour doesn't last forever, but it's quite draining, especially when he's almost as big as me! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hello 2009/9/10 stephaniesirr <mark.grabiec@...>: > Just to let people know, we've done a four week trial of this and it has done absolutely nothing at all. NO reduction at all in SIB, it hasn't touched it. Â Only slight side effect increased appetite. Â So, perhaps they'll use that as indication that Tom's SIB isn't " all in his head). Very bad at the moment - beating the crap out of himself. > > tends to be mornings and evenings predominantly. Â Doing my head in. (probably not doing a whole load for Tom's either) :-( > Be careful i went almost psychotic on liquid risperidone due to the tartaric or benzoate ingredients in the meds. -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hello 2009/9/10 JULIE GRIFFITHS <moppett1@...>: > Sorry I forgot something really important. If the urea cycle is not > working properly, you get ammonia. This is very toxic to bodily tissues. > This build up 'may' be causing some problems in not only your son but in > a majority of the kids. My daughter had a BIG problem with this pathway..... > > I remember how often she got up all right and then it was woefully > downhill (drunken sailor, meltdowns, spaced out) throughout the day. > This would correspond with a slow build up of ammonia. At the time she > couldn't put 2+2 together, literally. How do you tell the difference between this effect and fibro fog which i happen to have? How do you treat the ammonia? Im finding taking tonic water and supplements is helping me bowel wise and ive just upped my b6 to the right dose! -- is Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 GABA and 5HTP Autism Treatment From: jane_hogan@...Date: Thu, 10 Sep 2009 17:05:05 +0100Subject: Re: Re: Risperidone Does anyone know of any kind of supplement that would calm a very hormonal teenager down????? I know this behaviour doesn't last forever, but it's quite draining, especially when he's almost as big as me! Add other email accounts to Hotmail in 3 easy steps. Find out how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Purine in oatmeal. Goodness, that explains a lot with my daughter. She always felt absolutely lousy after oatmeal so I stopped cooking it:-(( I'll make up your ginger/lemon drink for my father tomorrow. Sharon Schachte schrieb: > > Oh I forgot to mention oat meal has purine in it too! > > *From:* Sharon Schachte <sharonmadmetals (DOT) com> > *To:* Autism-Biomedical- Europe@grou ps.com > *Sent:* Thursday, September 10, 2009 9:41:26 AM > *Subject:* Re: Re: Risperidone > > > > Believe it or not, carbonated water is good for ammonia build up. I > make a home made soda out of ginger and honey. Simmer peeled and cut 6 > inch piece of ginger in 3 cups water. Remove ginger pieces and add > 1/2 cup honey until blended. I use this as a syrup and add to cold > carbonated water to taste. > > The error in protein metabolism may be due to an overage of purine > rich foods in the diet. My son had a large purine issue and for > several months I had to limit his purine protein intake to an ounce > per day for a small child. Purine causes the build up of uric acid. We > follow Sara's diet, and Desorgher helped me with this. Meat, > peanut butter, cauliflower and asparagus are all sources of purine. > While I limited these proteins, I supplemented with Rice protein which > has many important amino acids. It does not however have carnatine or > creatine, so I would supplement with carnatine from time to time. > Carnatine helps the fatty acids reach the mitochondria in the muscles. > > I believe the dilated pupils are an immune system response to > something in his diet. What ever the culprit is, it may be causing a > rise in his dopamine levels making him " high " . > > Sharon > > > *From:* JULIE GRIFFITHS <moppett1@btinternet .com> > *To:* Autism-Biomedical- Europe@grou ps.com <http://ps.com/> > *Sent:* Thursday, September 10, 2009 4:23:27 AM > *Subject:* Re: Re: Risperidone > > > > Sorry I forgot something really important. If the urea cycle is not > working properly, you get ammonia. This is very toxic to bodily tissues. > This build up 'may' be causing some problems in not only your son but in > a majority of the kids. My daughter had a BIG problem with this > pathway..... > > I remember how often she got up all right and then it was woefully > downhill (drunken sailor, meltdowns, spaced out) throughout the day. > This would correspond with a slow build up of ammonia. At the time she > couldn't put 2+2 together, literally. > > > > JULIE GRIFFITHS schrieb: > > > > > > Steph, > > > > In that 20 minutes, have you fed him? Reason for asking is that I have > > been spending some time on protein metabolism. I decided to look into > > this because my liver enzymes were skyhigh last blood test and my doc > > had prescribed a liver detox. it happens to be an amino acid ('orthinine > > asparate' somewhere in the urea cycle. It's worked wonderfully but since > > looking into this, I found that this cycle is to some degree regulated > > by the thyroid. so we come back to the thyroid again. > > > > You mention zinc. I regularly supp with zinc and I regularly have low > > zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid > > and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is > > also related to thyroid. It's either high zinc with hypo or low zinc > > with hyper, can't remember-story of my life:-)) > > > > I am now a confirmed 'thyroid head' as per last blood draw so this makes > > sense to me. > > > > I can't remember where we left with thyroid and your son. Have you > > tested his basal temp first thing in the morning before getting up? It > > may shed some light on this..... > > > > > > > > stephaniesirr schrieb: > > > > > > > > > It varies . But often he wakes up full of smiles and then it's as > > > if a switch is flicked, he's enraged, sib, 20 minutes, then crying, > > > then just very flushed and exhausted. It's horrible. Morning and > > > evening tend to be worst. He's still saying " light off, light off " > > > (even when it is off actually) but then if it was migraine presume it > > > would last longer than the 10-20 minutes that these do. But there is > > > something visual in there definitely. Daytime, definitely calmer, > > > working well at school and meltdowns there tend to be avoidant and > > > brief. Not sure if it's linked to the whole waking up and winding down > > > process as that's certainly when it's most likely to spring out of > > > seemingly nowhere. He's taking adrenal support, and still on the > > > risperidone, also probiotic, bit of zinc (occasional, we're all a bit > > > low in zinc in this family). God only knows what condition his poor > > > brain is in from the all the banging. But he has gained 3 lb in weight > > > - probably due to the risperidone induced increased appetite (a side > > > effect that we rather welcome). He's now a whopping 4 stone and his > > > eleventh birthday is next week. But heaviest he's ever been which is a > > > good thing > > > > > > Steph x > > > > > > > > > > > > > > Steph, > > > > > > > > Can you pinpoint this at all? How is he when he just wakes up? > Does it > > > > increase throughout the day? > > > > > > > > > > > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > > > > > > > Just to let people know, we've done a four week trial of this > and it > > > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > > > hasn't touched it. Only slight side effect increased appetite. So, > > > > > perhaps they'll use that as indication that Tom's SIB isn't > " all in > > > > > his head). Very bad at the moment - beating the crap out of > himself. > > > > > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - www.avg.com <http://www.avg.com/> > > > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > > 09/09/09 06:53:00 > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > 09/09/09 06:53:00 > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00 > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.89/2359 - Release Date: 09/10/09 05:50:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Or get him into an epsom salts bath before he's knows what's happening:-))) B schrieb: > > > GABA and 5HTP > > > Autism-Biomedical- Europe@grou ps.com > From: jane_hogan@btintern et.com > Date: Thu, 10 Sep 2009 17:05:05 +0100 > Subject: Re: Re: Risperidone > > > > > > Does anyone know of any kind of supplement that would calm a very > hormonal teenager down????? I know this behaviour doesn't last > forever, but it's quite draining, especially when he's almost as big > as me! > > > > > > > Add other email accounts to Hotmail in 3 easy steps. Find out how. > <http://clk.atdmt.com/UKM/go/167688463/direct/01/> > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.89/2359 - Release Date: 09/10/09 05:50:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Hi , no this is all pre breakfast. What would a basal temperature reading show? His SIB usually coincides wtih him changing colour - he goes " white and spiteful " as my MIL calls it. All smiles, then pale, then bang. Whilst still lying in bed. We've just rerun his thyroid test which means he's been off adrenal support for a couple of days, back on it today. So adrenally where we are is supplementing adrenal cortex with a view to reintroducing iodine rich foods. Hoping to get a quick result back on thyroid test. and about to run One test although his lordship has decided that being bagged up overnight is an infringement of his civil liberties and won't tolerate it! He does eat a lot of eggs, he also likes cheese although doesn't get much of it. but also now loads of different veg - cucumber, celery, tomatoes, courgettes etc. Much broader diet than he used to have. On one ammonia test he had very high blood ammonia (think it was blood). but usually it's within range. but he also had one attack of diarrohea where it literally bleached his trousers but that was a frew years ago and that ammonia smell is now not present in stool. which doesn't mean it's not in blood of course. He drinks a lot of carbonated water, he loves mineral water. He also loves tea. ?? > > > > > > Steph, > > > > > > Can you pinpoint this at all? How is he when he just wakes up? Does it > > > increase throughout the day? > > > > > > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > > > > Just to let people know, we've done a four week trial of this and it > > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > > hasn't touched it. Only slight side effect increased appetite. So, > > > > perhaps they'll use that as indication that Tom's SIB isn't " all in > > > > his head). Very bad at the moment - beating the crap out of himself. > > > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > > > > > No virus found in this incoming message. > > > > Checked by AVG - www.avg.com > > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > 09/09/09 06:53:00 > > > > > > > > > > > > > > > > > ------------------------------------------------------------------------ > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: 09/09/09 06:53:00 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Strangely GABA sends Tom really odd. Hyper, not calm. 5HTP works great on me, very mellow, but nothing doing with Tom as far as I can tell. :-( But I know it works for many. > > > In a message dated 10/09/2009 20:24:32 GMT Daylight Time, > peter_2_@... writes: > > GABA and 5HTP > > > >>Not helping here.............. > > Mandi x > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 here we go... High uric acid and hypothyroidism:-))))))))))) Also<A significant correlation between thyroid function and purine nucleotide metabolism has been established in hypothyroidism.> http://www.ncbi.nlm.nih.gov/pubmed/11791637?ordinalpos=3 & itool=EntrezSystem2.PEn\ trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum Sharon Schachte schrieb: > > Believe it or not, carbonated water is good for ammonia build up. I > make a home made soda out of ginger and honey. Simmer peeled and cut 6 > inch piece of ginger in 3 cups water. Remove ginger pieces and add > 1/2 cup honey until blended. I use this as a syrup and add to cold > carbonated water to taste. > > The error in protein metabolism may be due to an overage of purine > rich foods in the diet. My son had a large purine issue and for > several months I had to limit his purine protein intake to an ounce > per day for a small child. Purine causes the build up of uric acid. We > follow Sara's diet, and Desorgher helped me with this. Meat, > peanut butter, cauliflower and asparagus are all sources of purine. > While I limited these proteins, I supplemented with Rice protein which > has many important amino acids. It does not however have carnatine or > creatine, so I would supplement with carnatine from time to time. > Carnatine helps the fatty acids reach the mitochondria in the muscles. > > I believe the dilated pupils are an immune system response to > something in his diet. What ever the culprit is, it may be causing a > rise in his dopamine levels making him " high " . > > Sharon > > > *From:* JULIE GRIFFITHS <moppett1@btinternet .com> > *To:* Autism-Biomedical- Europe@grou ps.com > *Sent:* Thursday, September 10, 2009 4:23:27 AM > *Subject:* Re: Re: Risperidone > > > > Sorry I forgot something really important. If the urea cycle is not > working properly, you get ammonia. This is very toxic to bodily tissues. > This build up 'may' be causing some problems in not only your son but in > a majority of the kids. My daughter had a BIG problem with this > pathway..... > > I remember how often she got up all right and then it was woefully > downhill (drunken sailor, meltdowns, spaced out) throughout the day. > This would correspond with a slow build up of ammonia. At the time she > couldn't put 2+2 together, literally. > > > > JULIE GRIFFITHS schrieb: > > > > > > Steph, > > > > In that 20 minutes, have you fed him? Reason for asking is that I have > > been spending some time on protein metabolism. I decided to look into > > this because my liver enzymes were skyhigh last blood test and my doc > > had prescribed a liver detox. it happens to be an amino acid ('orthinine > > asparate' somewhere in the urea cycle. It's worked wonderfully but since > > looking into this, I found that this cycle is to some degree regulated > > by the thyroid. so we come back to the thyroid again. > > > > You mention zinc. I regularly supp with zinc and I regularly have low > > zinc. So I had an idea and went to Pubmed and keyed in zinc and thyroid > > and bingo! low zinc and thyroid dysfunction. (higher than normal zinc is > > also related to thyroid. It's either high zinc with hypo or low zinc > > with hyper, can't remember-story of my life:-)) > > > > I am now a confirmed 'thyroid head' as per last blood draw so this makes > > sense to me. > > > > I can't remember where we left with thyroid and your son. Have you > > tested his basal temp first thing in the morning before getting up? It > > may shed some light on this..... > > > > > > > > stephaniesirr schrieb: > > > > > > > > > It varies . But often he wakes up full of smiles and then it's as > > > if a switch is flicked, he's enraged, sib, 20 minutes, then crying, > > > then just very flushed and exhausted. It's horrible. Morning and > > > evening tend to be worst. He's still saying " light off, light off " > > > (even when it is off actually) but then if it was migraine presume it > > > would last longer than the 10-20 minutes that these do. But there is > > > something visual in there definitely. Daytime, definitely calmer, > > > working well at school and meltdowns there tend to be avoidant and > > > brief. Not sure if it's linked to the whole waking up and winding down > > > process as that's certainly when it's most likely to spring out of > > > seemingly nowhere. He's taking adrenal support, and still on the > > > risperidone, also probiotic, bit of zinc (occasional, we're all a bit > > > low in zinc in this family). God only knows what condition his poor > > > brain is in from the all the banging. But he has gained 3 lb in weight > > > - probably due to the risperidone induced increased appetite (a side > > > effect that we rather welcome). He's now a whopping 4 stone and his > > > eleventh birthday is next week. But heaviest he's ever been which is a > > > good thing > > > > > > Steph x > > > > > > > > > > > > > > Steph, > > > > > > > > Can you pinpoint this at all? How is he when he just wakes up? > Does it > > > > increase throughout the day? > > > > > > > > > > > > > > > > > > > > stephaniesirr schrieb: > > > > > > > > > > > > > > > Just to let people know, we've done a four week trial of this > and it > > > > > has done absolutely nothing at all. NO reduction at all in SIB, it > > > > > hasn't touched it. Only slight side effect increased appetite. So, > > > > > perhaps they'll use that as indication that Tom's SIB isn't > " all in > > > > > his head). Very bad at the moment - beating the crap out of > himself. > > > > > > > > > > tends to be mornings and evenings predominantly. Doing my head in. > > > > > (probably not doing a whole load for Tom's either) :-( > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > > > > > > > > No virus found in this incoming message. > > > > > Checked by AVG - www.avg.com <http://www.avg.com/> > > > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > > 09/09/09 06:53:00 > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > > > > No virus found in this incoming message. > > > Checked by AVG - www.avg.com > > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > > 09/09/09 06:53:00 > > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 8.5.409 / Virus Database: 270.13.87/2356 - Release Date: > 09/09/09 06:53:00 > > > > > > > ------------------------------------------------------------------------ > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 8.5.409 / Virus Database: 270.13.89/2359 - Release Date: 09/10/09 05:50:00 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Nothing helping here at the moment. I stopped the majority of supplements because I couldn't see what was working. I haven't seen any difference and the hee bee gee bees continue! I really think it is hormones. I think with most teenagers that can burn off energy playing football, give a bit of back chat etc., this must help. With I guess throwing things around, yelling are his way of telling us all is not the way he would like it to be. I seem to be getting a lot of these behaviours though. Just come in to find he has been an angel for his dad. After two major tantrums yesterday afternoon involving me having to restrain him because he was literally throwing stuff around the house, he spent the evening watching the England game with Andy, without any sign of grouchy behaviour!! Mum231ASD@... wrote: In a message dated 10/09/2009 20:24:32 GMT Daylight Time, peter_2_hotmail writes: GABA and 5HTP >>Not helping here.............. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Nothing helping here at the moment. I stopped the majority of supplements because I couldn't see what was working. I haven't seen any difference and the hee bee gee bees continue! I really think it is hormones. I think with most teenagers that can burn off energy playing football, give a bit of back chat etc., this must help. With I guess throwing things around, yelling are his way of telling us all is not the way he would like it to be. I seem to be getting a lot of these behaviours though. Just come in to find he has been an angel for his dad. After two major tantrums yesterday afternoon involving me having to restrain him because he was literally throwing stuff around the house, he spent the evening watching the England game with Andy, without any sign of grouchy behaviour!! Mum231ASD@... wrote: In a message dated 10/09/2009 20:24:32 GMT Daylight Time, peter_2_hotmail writes: GABA and 5HTP >>Not helping here.............. Mandi x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 sounds like you need more nights out whilst he watches the footie with Andy... A result in every sense of the word? > > > > > > In a message dated 10/09/2009 20:24:32 GMT Daylight Time, > > peter_2_@... writes: > > > > GABA and 5HTP > > > > >>Not helping here.............. > > > > Mandi x > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 Oh yes. Just back from a therapeutic shopping trip! stephaniesirr wrote: sounds like you need more nights out whilst he watches the footie with Andy... A result in every sense of the word? > > > > > > In a message dated 10/09/2009 20:24:32 GMT Daylight Time, > > peter_2_@... writes: > > > > GABA and 5HTP > > > > >>Not helping here.............. > > > > Mandi x > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2009 Report Share Posted September 10, 2009 could this be juvenile bipolar? http://www.jbrf.org/juv_bipolar/index.html - also read faq page (according to some DANs it has high comorbity with autism, so would not be unusual or surprising....) if sounds familiar, consider, lithium, inositol (probably not in combo, or do try and keep an eye), upping fish oils... Natasa Nothing helping here at the moment. I stopped the majority of supplements because I couldn't see what was working. I haven't seen any difference and the hee bee gee bees continue! I really think it is hormones. I think with most teenagers that can burn off energy playing football, give a bit of back chat etc., this must help. With I guess throwing things around, yelling are his way of telling us all is not the way he would like it to be. I seem to be getting a lot of these behaviours though. Just come in to find he has been an angel for his dad. After two major tantrums yesterday afternoon involving me having to restrain him because he was literally throwing stuff around the house, he spent the evening watching the England game with Andy, without any sign of grouchy behaviour!! Mum231ASD@... wrote: In a message dated 10/09/2009 20:24:32 GMT Daylight Time, peter_2_@... writes: GABA and 5HTP >>Not helping here.............. Mandi x Quote Link to comment Share on other sites More sharing options...
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