Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hello everyone , I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) . The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal . Do you think i should ask for more test to confirm PANDAS or should i forgive it ??? Thanks in advance , your advices will be very helpful . Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful .Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful .Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hi , Many thanks again for the informationit will be really helpful if you can tell me the right dosage to start with for a 33lbs child. I did try Azithro 6 months ago 3ml(200mg/5ml) once daily for a month, i did not see much difference, then since her ASO titres was negative and not much change in her behaviour(especially OCD) i thought probably not PANDAS. Now i want to try again Azithro. Do you think above dosage is OK to start with? If so do i need to give ANTIFUNGAL and ANTIVIRAL as well along with it as killing bacteria leads to fungal and viral growth.? And one more thing what is the best time to give probiotics(how many hours away from azithro?). Any suggestions will be very helpful. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 13:15Subject: Re: ASO title positive It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 ,I live in Spain. My peditrician at hospital is dr Lamuño . Altought he is not a DAN doctor , he is a veey open mind doctor . He is one of the few doctor who treats PANDAS in my country (.http://www.ncbi.nlm.nih.gov/pubmed/12537770 )He always has tought Marina has an autoinmune problem , but he really dont think she it is PANDAS . Because , as I have told you , my daughter has a really complicated profile . Two years ago we did an " experiment" and we treated her with augmentine for one mounth and in that time Marina was really good . She started walking !!!! .( she was 4 years old..... ) .At the same time we treated with fluconazol and metronidazol , so i dont know exactly which was the reason.My DAN doctor dont think , also , Marina has PANDAS , but i really think it could be . She has times when her behabiours get worse , she becomes very, very irritable , shout a lot , becames very obsesive with her pictures . Lately we bought an ipad for her , and we have had to eliminate it because she was so, so ,so dependant on it that it was terrible . Always shouting asking for it . At school didnt wanted to work because she only wanted to come back house to get her ipad .Do you think i should do any more test ? Enviado desde mi iPadEl 26/02/2012, a las 14:15, Fund escribió: It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Cindy - Not here. But, we did zithro for 6 months, with little gain. My son got strep 2x on zithro. Some strains of strep and other infections can be resistant to zithro. I highly suggest you do testing to find all the potential infectious triggers. And, then choose the best treatment from there. WE found that we were not only dealing with strep, but with mycoplasma pneumonia, lyme, and CMV. Also, there is a Facebook group for PANDAS that you can join. There may be parents there who can recommend a specialist in the UK.Good luck - Ruth Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful .Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Sorry ,The pubmed reference was wrong . I think it is the right one . It is about one case of PANDAS he treated in 2009.http://www.ncbi.nlm.nih.gov/pubmed/19598136Enviado desde mi iPadEl 26/02/2012, a las 14:15, Fund escribió: It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 It may help if you do a whole viral panel so you know what you are fighting. Since your daughter did respond well to augmentin it may be an autoimmune disorder which is triggerred by strep. There is a yahoo group called NIDS which stands for neuro immune dysfunction syndrome. You can get some info off their website www.NIDS.net as well as joing the group. Your daughter should have a whole immune/viral panel which you can find on the NIDS website. The first line of treament for PANDAS is to do high dose long term antibitoic either azithromycin or augmentin (azithro is easier on the gut and requires less dosing). The next treatment would be tp try a high dose steroid burst (1mg/kg of body weight prednisone). The third line of treament would be IVIG which could be monthly any where from once to over 2 years. My son regressed into autism following a bout of pneumonia and vaccines at 12 months of age. He is 15 now and he really regressed at age 13 with self injury and aggression. Severe case of PANDAS. We tried high dose azithromycin and steroids and he was slightly better. We then did 9 monthly IVIG treatments which really helped but we saw him regress by the end of each month and knew wwe would have to go monthly for a long time which was expensive. In mid Dec 2012 I took him to Panama for stem cells www.cellmedicine.com It has only been two months but he is a lot better and we have not had to take him for IVIG yet. He is much, much happier and more agreeable. In Panama they told me that for Autism the younger kids just need one or two treaments and the older kids may need 4 or 5 treatments to become recovered of Autism. I am planning to go back again in late May. It is expensive about $15,000 a treatment. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:37 AMSubject: Re: ASO title positive , I live in Spain. My peditrician at hospital is dr Lamuño . Altought he is not a DAN doctor , he is a veey open mind doctor . He is one of the few doctor who treats PANDAS in my country (.http://www.ncbi.nlm.nih.gov/pubmed/12537770 ) He always has tought Marina has an autoinmune problem , but he really dont think she it is PANDAS . Because , as I have told you , my daughter has a really complicated profile . Two years ago we did an " experiment" and we treated her with augmentine for one mounth and in that time Marina was really good . She started walking !!!! .( she was 4 years old..... ) .At the same time we treated with fluconazol and metronidazol , so i dont know exactly which was the reason. My DAN doctor dont think , also , Marina has PANDAS , but i really think it could be . She has times when her behabiours get worse , she becomes very, very irritable , shout a lot , becames very obsesive with her pictures . Lately we bought an ipad for her , and we have had to eliminate it because she was so, so ,so dependant on it that it was terrible . Always shouting asking for it . At school didnt wanted to work because she only wanted to come back house to get her ipad . Do you think i should do any more test ? Enviado desde mi iPad El 26/02/2012, a las 14:15, Fund escribió: It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 That dose seems fine for a 33 lb child. My son was 170 pound and was getting 500 mgs once per day of azithro. You may want to try augmentin instead of the azithro. Some kids respond to one or the other. Augmentin is tough on the gut though. I would run some tests to see what you are fighting. There are lots of other bacterias that are kids get that require a different antibiotic like vancomycin. Our doctor uses the Great Plains Lab to run a MOAT test (Microbial Organic Acids Test) to look for yeast/fungi/bacterias. He also uses Genova Diagnostics to check for bacterias. Once you get those results you will know which antibiotic and whether you need an antifungal. I can tell if my son has yeast as he will awake at night and he gets a lot of excess saliva. As far as an antiviral goes we have used valtrex. You may want to hold off on the antiviral till you figure out what else is going on. The kids can have strong reaction to valtrex with a lot of die off and you will not know if it's the antiviral or the antibiotics. The valtrex will only work on the herpes viruses. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:31 AMSubject: Re: ASO title positive Hi , Many thanks again for the informationit will be really helpful if you can tell me the right dosage to start with for a 33lbs child. I did try Azithro 6 months ago 3ml(200mg/5ml) once daily for a month, i did not see much difference, then since her ASO titres was negative and not much change in her behaviour(especially OCD) i thought probably not PANDAS. Now i want to try again Azithro. Do you think above dosage is OK to start with? If so do i need to give ANTIFUNGAL and ANTIVIRAL as well along with it as killing bacteria leads to fungal and viral growth.? And one more thing what is the best time to give probiotics(how many hours away from azithro?). Any suggestions will be very helpful. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 13:15Subject: Re: ASO title positive It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Hi Ruth, Many thanks for the suggestion, recently we have done some tests, yeast and clostridia markers was to the higher end, OCD suggests definite strep, there is no fever, no diarrhiea, so based on the symptoms there is strep, bacterial and fungal problem.Immunology profile was normal, normal levels of immunoglobulins. Tests sometimes not reliable, spent recently quite a lot for testings nothing shows any big abnormality other than her OCD. I need to experiment with medication what works and what not. This group is so helpful and knowledgeable that doctors sometimes dont know what is best treatment for the child. I just added SAMENTO, CUMANDA and LDM and would definitely try zithro along with it so at least i am addressing all(strep,yeast,bacteria and virus). Many thanks, Cindy. To: mb12valtrex Sent: Sunday, 26 February 2012, 13:39Subject: Re: ASO title positive Cindy - Not here. But, we did zithro for 6 months, with little gain. My son got strep 2x on zithro. Some strains of strep and other infections can be resistant to zithro. I highly suggest you do testing to find all the potential infectious triggers. And, then choose the best treatment from there. WE found that we were not only dealing with strep, but with mycoplasma pneumonia, lyme, and CMV. Also, there is a Facebook group for PANDAS that you can join. There may be parents there who can recommend a specialist in the UK. Good luck - Ruth Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful .Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 The best thing I ever did to treat my PANDAS/PITANDS son (non responder to all oral abx (we tried 5 prophylactically over 2 years)-PANDAS got worse (hospitalization)), then IVIG which helped PANDAS symptoms but brought debilitating anxiety on high dose (low dose helped)but what ultimately is bringing recovery FOR US was a combo treatment of.....1. Tonsil/adenoidectomy 2. LDA shots and 3. Dr Goldberg the NIDS doc (uses antivirals, antifungals, and appropriate SSRI's). And this was after 3 PANDAS/DAN docs attempt at treatment... We are in managed recovery now-finally, after 5 straight years of hell...finally going consistently (http://www.food-allergy.org/epdstatus.html)up instead of the roller coaster of up and down. I can finally breathe, and I want others to breathe too which is why I shared our 'magic bullet'. HTH someone, kersten www.thefarrellfoundation.org > > At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? > > > > To: mb12valtrex > Sent: Sunday, February 26, 2012 3:57 AM > Subject: ASO title positive > > >  > Hello everyone , > I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) . > The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . > She has an important gross motor delay , thieve failure and leacky gut . She is non verbal . > Do you think i should ask for more test to confirm PANDAS or should i forgive it ??? > Thanks in advance , your advices will be very helpful . > Isabel > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Many thanks susan, as i am now a bit confused as to whether try vancomycin first and get rid off clostridia as her result was 226(range-0-227). or zithro? Can clostridia causes OCD, scripting symptoms? Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 14:02Subject: Re: ASO title positive That dose seems fine for a 33 lb child. My son was 170 pound and was getting 500 mgs once per day of azithro. You may want to try augmentin instead of the azithro. Some kids respond to one or the other. Augmentin is tough on the gut though. I would run some tests to see what you are fighting. There are lots of other bacterias that are kids get that require a different antibiotic like vancomycin. Our doctor uses the Great Plains Lab to run a MOAT test (Microbial Organic Acids Test) to look for yeast/fungi/bacterias. He also uses Genova Diagnostics to check for bacterias. Once you get those results you will know which antibiotic and whether you need an antifungal. I can tell if my son has yeast as he will awake at night and he gets a lot of excess saliva. As far as an antiviral goes we have used valtrex. You may want to hold off on the antiviral till you figure out what else is going on. The kids can have strong reaction to valtrex with a lot of die off and you will not know if it's the antiviral or the antibiotics. The valtrex will only work on the herpes viruses. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:31 AMSubject: Re: ASO title positive Hi , Many thanks again for the informationit will be really helpful if you can tell me the right dosage to start with for a 33lbs child. I did try Azithro 6 months ago 3ml(200mg/5ml) once daily for a month, i did not see much difference, then since her ASO titres was negative and not much change in her behaviour(especially OCD) i thought probably not PANDAS. Now i want to try again Azithro. Do you think above dosage is OK to start with? If so do i need to give ANTIFUNGAL and ANTIVIRAL as well along with it as killing bacteria leads to fungal and viral growth.? And one more thing what is the best time to give probiotics(how many hours away from azithro?). Any suggestions will be very helpful. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 13:15Subject: Re: ASO title positive It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2012 Report Share Posted February 26, 2012 Yes, clostridia can cause all of the same symptoms as PANDAS......so can lyme, and myco plasma pneumonia.....they all also mimic autism. It is all an auto immune response to some bacteria/bug. My son had klebsiella bacteria for awhile and I think he was treated with keflex.....not sure though. It is worth it to do some tests to find out what bacteria are in the gut. Different antibiotics are needed for clostridia, lyme, pandas, etc. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 10:23 AMSubject: Re: ASO title positive Many thanks susan, as i am now a bit confused as to whether try vancomycin first and get rid off clostridia as her result was 226(range-0-227). or zithro? Can clostridia causes OCD, scripting symptoms? Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 14:02Subject: Re: ASO title positive That dose seems fine for a 33 lb child. My son was 170 pound and was getting 500 mgs once per day of azithro. You may want to try augmentin instead of the azithro. Some kids respond to one or the other. Augmentin is tough on the gut though. I would run some tests to see what you are fighting. There are lots of other bacterias that are kids get that require a different antibiotic like vancomycin. Our doctor uses the Great Plains Lab to run a MOAT test (Microbial Organic Acids Test) to look for yeast/fungi/bacterias. He also uses Genova Diagnostics to check for bacterias. Once you get those results you will know which antibiotic and whether you need an antifungal. I can tell if my son has yeast as he will awake at night and he gets a lot of excess saliva. As far as an antiviral goes we have used valtrex. You may want to hold off on the antiviral till you figure out what else is going on. The kids can have strong reaction to valtrex with a lot of die off and you will not know if it's the antiviral or the antibiotics. The valtrex will only work on the herpes viruses. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:31 AMSubject: Re: ASO title positive Hi , Many thanks again for the informationit will be really helpful if you can tell me the right dosage to start with for a 33lbs child. I did try Azithro 6 months ago 3ml(200mg/5ml) once daily for a month, i did not see much difference, then since her ASO titres was negative and not much change in her behaviour(especially OCD) i thought probably not PANDAS. Now i want to try again Azithro. Do you think above dosage is OK to start with? If so do i need to give ANTIFUNGAL and ANTIVIRAL as well along with it as killing bacteria leads to fungal and viral growth.? And one more thing what is the best time to give probiotics(how many hours away from azithro?). Any suggestions will be very helpful. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 13:15Subject: Re: ASO title positive It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, February 26, 2012 8:11 AMSubject: Re: ASO title positive Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. Many thanks, Cindy. To: "mb12valtrex " <mb12valtrex > Sent: Sunday, 26 February 2012, 12:35Subject: Re: ASO title positive At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? To: mb12valtrex Sent: Sunday, February 26, 2012 3:57 AMSubject: ASO title positive Hello everyone ,I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) .The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . She has an important gross motor delay , thieve failure and leacky gut . She is non verbal .Do you think i should ask for more test to confirm PANDAS or should i forgive it ???Thanks in advance , your advices will be very helpful ..Isabel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 Hi , We are in similar conundrum as you are. We are very keen on Stem Cell and have been reading about Neil Riordan and his approach with high anticipation. How has your experience been in terms of improvements you seen compared with other protocols. Were you administered with Umbilical Blood cells/ bone marrow stem cells? If possible, can you share the details please? we have more questions and will appreciate if you can share the insight please. Samir samir_Deshpande@... > > It may help if you do a whole viral panel so you know what you are fighting. Since your daughter did respond well to augmentin it may be an autoimmune disorder which is triggerred by strep. There is a yahoo group called NIDS which stands for neuro immune dysfunction syndrome. You can get some info off their website www.NIDS.net as well as joing the group. Your daughter should have a whole immune/viral panel which you can find on the NIDS website. >  > The first line of treament for PANDAS is to do high dose long term antibitoic either azithromycin or augmentin (azithro is easier on the gut and requires less dosing). The next treatment would be tp try a high dose steroid burst (1mg/kg of body weight prednisone). The third line of treament would be IVIG which could be monthly any where from once to over 2 years. >  > My son regressed into autism following a bout of pneumonia and vaccines at 12 months of age. He is 15 now and he really regressed at age 13 with self injury and aggression. Severe case of PANDAS. We tried high dose azithromycin and steroids and he was slightly better. We then did 9 monthly IVIG treatments which really helped but we saw him regress by the end of each month and knew wwe would have to go monthly for a long time which was expensive. >  > In mid Dec 2012 I took him to Panama for stem cells www.cellmedicine.com It has only been two months but he is a lot better and we have not had to take him for IVIG yet. He is much, much happier and more agreeable. In Panama they told me that for Autism the younger kids just need one or two treaments and the older kids may need 4 or 5 treatments to become recovered of Autism. I am planning to go back again in late May. It is expensive about $15,000 a treatment. >  > > > > To: " mb12valtrex " <mb12valtrex > > Sent: Sunday, February 26, 2012 8:37 AM > Subject: Re: ASO title positive > > >  > , > I live in Spain. > My peditrician at hospital is dr Lamuño . Altought he is not a DAN doctor , he is a veey open mind doctor . He is one of the few doctor who treats PANDAS in my country (.http://www.ncbi.nlm.nih.gov/pubmed/12537770 ) > He always has tought Marina has an autoinmune problem , but he really dont think she it is PANDAS . Because , as I have told you , my daughter has a really complicated profile . > Two years ago we did an " experiment " and we treated her with augmentine for one mounth and in that time Marina was really good . She started walking !!!! .( she was 4 years old..... ) .At the same time we treated with fluconazol and metronidazol , so i dont know exactly which was the reason. > My DAN doctor dont think , also , Marina has PANDAS , but i really think it could be . She has times when her behabiours get worse , she becomes very, very irritable , shout a lot , becames very obsesive with her pictures . Lately we bought an ipad for her , and we have had to eliminate it because she was so, so ,so dependant on it that it was terrible . Always shouting asking for it . At school didnt wanted to work because she only wanted to come back house to get her ipad . > Do you think i should do any more test ? > > Enviado desde mi iPad > > El 26/02/2012, a las 14:15, Fund escribió: > > >  > >It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. > > > > > > > > > >To: " mb12valtrex " <mb12valtrex > > >Sent: Sunday, February 26, 2012 8:11 AM > >Subject: Re: ASO title positive > > > > > > > >Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. > >We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. > > > >Many thanks, > >Cindy. > > > > > > > > > >To: " mb12valtrex " <mb12valtrex > > >Sent: Sunday, 26 February 2012, 12:35 > >Subject: Re: ASO title positive > > > > > > > >At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? > > > > > > > > > >To: mb12valtrex > >Sent: Sunday, February 26, 2012 3:57 AM > >Subject: ASO title positive > > > > > > > >Hello everyone , > >I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) . > >The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . > >She has an important gross motor delay , thieve failure and leacky gut . She is non verbal . > >Do you think i should ask for more test to confirm PANDAS or should i forgive it ??? > >Thanks in advance , your advices will be very helpful . > >Isabel > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 12, 2012 Report Share Posted April 12, 2012 We took our son to Panama in Dec. 2011 for 4 infusions of placenta and umbilical cord stem cells. They use these two types of cells to combat both the autoimmune portion of autism as well as repairing the damaged brain cells by bringing oxygen to the brain. You can learn more about the procedure and why these cells are used by going to the Stem Cell Institutes website www.cellmedicine.com We really have not seen much progress as far as far as our sons PANDAS symptoms. We have seen gains in language and cognition. We are planning to go back to Panama for more cells in late May. To: mb12valtrex Sent: Thursday, April 12, 2012 12:40 PM Subject: Re: ASO title positive Hi , We are in similar conundrum as you are. We are very keen on Stem Cell and have been reading about Neil Riordan and his approach with high anticipation. How has your experience been in terms of improvements you seen compared with other protocols. Were you administered with Umbilical Blood cells/ bone marrow stem cells? If possible, can you share the details please? we have more questions and will appreciate if you can share the insight please. Samir samir_Deshpande@... > > It may help if you do a whole viral panel so you know what you are fighting. Since your daughter did respond well to augmentin it may be an autoimmune disorder which is triggerred by strep. There is a yahoo group called NIDS which stands for neuro immune dysfunction syndrome. You can get some info off their website www.NIDS.net as well as joing the group. Your daughter should have a whole immune/viral panel which you can find on the NIDS website. >  > The first line of treament for PANDAS is to do high dose long term antibitoic either azithromycin or augmentin (azithro is easier on the gut and requires less dosing). The next treatment would be tp try a high dose steroid burst (1mg/kg of body weight prednisone). The third line of treament would be IVIG which could be monthly any where from once to over 2 years. >  > My son regressed into autism following a bout of pneumonia and vaccines at 12 months of age. He is 15 now and he really regressed at age 13 with self injury and aggression. Severe case of PANDAS. We tried high dose azithromycin and steroids and he was slightly better. We then did 9 monthly IVIG treatments which really helped but we saw him regress by the end of each month and knew wwe would have to go monthly for a long time which was expensive. >  > In mid Dec 2012 I took him to Panama for stem cells www.cellmedicine.com It has only been two months but he is a lot better and we have not had to take him for IVIG yet. He is much, much happier and more agreeable. In Panama they told me that for Autism the younger kids just need one or two treaments and the older kids may need 4 or 5 treatments to become recovered of Autism. I am planning to go back again in late May. It is expensive about $15,000 a treatment. >  > > > > To: "mb12valtrex " <mb12valtrex > > Sent: Sunday, February 26, 2012 8:37 AM > Subject: Re: ASO title positive > > >  > , > I live in Spain. > My peditrician at hospital is dr Lamuño . Altought he is not a DAN doctor , he is a veey open mind doctor . He is one of the few doctor who treats PANDAS in my country (.http://www.ncbi.nlm.nih.gov/pubmed/12537770 ) > He always has tought Marina has an autoinmune problem , but he really dont think she it is PANDAS . Because , as I have told you , my daughter has a really complicated profile . > Two years ago we did an " experiment" and we treated her with augmentine for one mounth and in that time Marina was really good . She started walking !!!! .( she was 4 years old..... ) .At the same time we treated with fluconazol and metronidazol , so i dont know exactly which was the reason. > My DAN doctor dont think , also , Marina has PANDAS , but i really think it could be . She has times when her behabiours get worse , she becomes very, very irritable , shout a lot , becames very obsesive with her pictures . Lately we bought an ipad for her , and we have had to eliminate it because she was so, so ,so dependant on it that it was terrible . Always shouting asking for it . At school didnt wanted to work because she only wanted to come back house to get her ipad . > Do you think i should do any more test ? > > Enviado desde mi iPad > > El 26/02/2012, a las 14:15, Fund escribió: > > >  > >It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. > > > > > > > > > >To: "mb12valtrex " <mb12valtrex > > >Sent: Sunday, February 26, 2012 8:11 AM > >Subject: Re: ASO title positive > > > > > > > >Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. > >We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. > > > >Many thanks, > >Cindy. > > > > > > > > > >To: "mb12valtrex " <mb12valtrex > > >Sent: Sunday, 26 February 2012, 12:35 > >Subject: Re: ASO title positive > > > > > > > >At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? > > > > > > > > > >To: mb12valtrex > >Sent: Sunday, February 26, 2012 3:57 AM > >Subject: ASO title positive > > > > > > > >Hello everyone , > >I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) . > >The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . > >She has an important gross motor delay , thieve failure and leacky gut . She is non verbal . > >Do you think i should ask for more test to confirm PANDAS or should i forgive it ??? > >Thanks in advance , your advices will be very helpful . > >Isabel > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2012 Report Share Posted April 17, 2012 Hi , Did you have the umbilical stem cells preserved? While we didn't bank them for our son, we have banked our daughters umbilical stem cells. Also how much does the procedure cost? Does it need multiple visits? Appreciate your reply. Thanks! Samir > > > > It may help if you do a whole viral panel so you know what you are fighting. Since your daughter did respond well to augmentin it may be an autoimmune disorder which is triggerred by strep. There is a yahoo group called NIDS which stands for neuro immune dysfunction syndrome. You can get some info off their website www.NIDS.net as well as joing the group. Your daughter should have a whole immune/viral panel which you can find on the NIDS website. > >  > > The first line of treament for PANDAS is to do high dose long term antibitoic either azithromycin or augmentin (azithro is easier on the gut and requires less dosing). The next treatment would be tp try a high dose steroid burst (1mg/kg of body weight prednisone). The third line of treament would be IVIG which could be monthly any where from once to over 2 years. > >  > > My son regressed into autism following a bout of pneumonia and vaccines at 12 months of age. He is 15 now and he really regressed at age 13 with self injury and aggression. Severe case of PANDAS. We tried high dose azithromycin and steroids and he was slightly better. We then did 9 monthly IVIG treatments which really helped but we saw him regress by the end of each month and knew wwe would have to go monthly for a long time which was expensive. > >  > > In mid Dec 2012 I took him to Panama for stem cells www.cellmedicine.com It has only been two months but he is a lot better and we have not had to take him for IVIG yet. He is much, much happier and more agreeable. In Panama they told me that for Autism the younger kids just need one or two treaments and the older kids may need 4 or 5 treatments to become recovered of Autism. I am planning to go back again in late May. It is expensive about $15,000 a treatment. > >  > > > > > > From: Isabel <isagargo@> > > To: " mb12valtrex " <mb12valtrex > > > Sent: Sunday, February 26, 2012 8:37 AM > > Subject: Re: ASO title positive > > > > > >  > > , > > I live in Spain. > > My peditrician at hospital is dr Lamuño . Altought he is not a DAN doctor , he is a veey open mind doctor . He is one of the few doctor who treats PANDAS in my country (.http://www.ncbi.nlm.nih.gov/pubmed/12537770 ) > > He always has tought Marina has an autoinmune problem , but he really dont think she it is PANDAS . Because , as I have told you , my daughter has a really complicated profile . > > Two years ago we did an " experiment " and we treated her with augmentine for one mounth and in that time Marina was really good . She started walking !!!! .( she was 4 years old..... ) .At the same time we treated with fluconazol and metronidazol , so i dont know exactly which was the reason. > > My DAN doctor dont think , also , Marina has PANDAS , but i really think it could be . She has times when her behabiours get worse , she becomes very, very irritable , shout a lot , becames very obsesive with her pictures . Lately we bought an ipad for her , and we have had to eliminate it because she was so, so ,so dependant on it that it was terrible . Always shouting asking for it . At school didnt wanted to work because she only wanted to come back house to get her ipad . > > Do you think i should do any more test ? > > > > Enviado desde mi iPad > > > > El 26/02/2012, a las 14:15, Fund <susan_fund@> escribió: > > > > > >  > > >It is very, very hard to find a PANDAS specialist in the US.....there are less than 10 that I have heard of. I did not hear of any in the UK. Try www.pandasnetwork.org or www.pandasresourcenetwork.org The first website has a white paper about PANDAS/PANS that was just published by Dr Swedo......has some current info. Try to get your child a script for azithromycin for a good month and see if the symptoms subside. > > > > > > > > > > > >From: Cindy Kannavil <ckannavil@> > > >To: " mb12valtrex " <mb12valtrex > > > >Sent: Sunday, February 26, 2012 8:11 AM > > >Subject: Re: ASO title positive > > > > > > > > > > > >Thanks for the information. I started getting the feeling that my daughter has pandas even though her ASO titres were negative. > > >We live in LONDON, Is there any PANDAS specialist in Uk you know about who treats children based on symptoms. > > > > > >Many thanks, > > >Cindy. > > > > > > > > > > > >From: Fund <susan_fund@> > > >To: " mb12valtrex " <mb12valtrex > > > >Sent: Sunday, 26 February 2012, 12:35 > > >Subject: Re: ASO title positive > > > > > > > > > > > >At this point in time there are NO reliable tests for PANDAS. We tracked my sons ASO/DNASE titers every other month for 2 years which slowly came down into a normal range and then he was exposed to strep several times and he had a major PANDAS flare up (almost had to be sent to a psychiatric insitute due to self injury and aggresssion). While his flare up was at an all time high his titers stayed in range....lowest in over 2 years. We wnet to see a PANDAS sepcialist in NJ and he told us that 50% of PANDAS kids do NOT have high titers and he treats based on symptoms which helped my kid. My son is not recovered from PANDAS yet but he is much better ans safer. What state do you live in? > > > > > > > > > > > >From: isabel <isagargo@> > > >To: mb12valtrex > > >Sent: Sunday, February 26, 2012 3:57 AM > > >Subject: ASO title positive > > > > > > > > > > > >Hello everyone , > > >I have a 6 years old daughter , ASD . Recently we have done a blood test and we have test ASO title ( we have done it severals times ago and always been negative ) . > > >The result come back and this time it is positive . My peditrician , who is used to treat PANDAS,didnt give much importance because he said it was not so high . The title was 232 ( normal range till 200 ) .my daughter dont have the typical profyle of PANDA, althoug she is very irritable , aobsesive with objects and situations . But she has no tics , but a lot of stimms and she dont use to be agressive . > > >She has an important gross motor delay , thieve failure and leacky gut . She is non verbal . > > >Do you think i should ask for more test to confirm PANDAS or should i forgive it ??? > > >Thanks in advance , your advices will be very helpful . > > >Isabel > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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