Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hi - I could be behind on some of the most current info on PANDAS, but I believe your child's doctor is technically wrong on this. If your child's ASO is elevated and he has onset of OCD and changes ... and you already said his ASO went down and so did his symptoms ... this is what PANDAS IS! Dr Swedo herself (has written the most papers on this from the Natl Inst of Mental Hlth - part of the NIH) stated that strictly adhering to the PANDAS criteria is for ** research purposes **, not for actual diagnosis. However, the lack of auto-antibodies to some of those tested in that PANDAS profile are a good sign .. this has not become a complete autoimmune breakdown. Dr Goldberg would say yes your child does appear to have PANDAS and he would provide your child with the safest yet still aggressive treatments available to help him. With children misdiagnosed with " autism " , there are lots of cases of neuro autoantibodies, but only a percentage. Does this mean labs indicate that this child does not have " misdiagnosed autism " ? No!!! (Sorry - I'm getting irritated at one more example of a child not getting treatment they NEED because of ignorance, closed minds, strict parameters, and I'm about to get on my soapbox... ) It doesn't mean that left untreated, these things would happen later ... they don't know the freakin' time line for this yet! They haven't even determined other co-existing factors yet. One child w/ PANDAS could have an elevated sed rate and positive ANA titer, whereas another may deplete all their iron and B12 instead of having auto-antibodies, and that can actually be considered an alternative " acute phase reactant " in establishing/meeting criteria for such things as rheumatic fever in the absence of other markers like sed rate, ANA titer, and c-reactive protein - but not many doctors know, remember, or consider that apparently. Before I get too hopping mad, does your child " not having PANDAS " mean he has no intention of treating it?? Because if you have trouble down the road with symptom exacerbations in the absence of visible throat infections, and the specialist has said your child doesn't have PANDAS, then you may have trouble getting him medical care, so I urge you to fight this NOW. Your child may already beginning to show signs of anemia in the high red blood cells *I think* - you should ask for an Iron panel (including ferriten) and a B12 & folic acid level. Do it asap so that even if they're normal now, you will have documentation when in a year from now they've been depleted. (This is the ONLY thing that has gotten me medical care recently was having proof that one year ago my B12 & Iron were within normal limits and then completely depleted.) Technically this is probably a good thing since it's a correctable alternative immune response - by treating underlying infections. When I get my computer fixed and can access my papers in Word, I will email you a question and answer with PANDAS experts from the NIMH - at that time I'll refresh my memory on what exactly they said about kids not matching all parameters. I'd recommend taking this back to the doctor. BTW - the eosiniphils are very high! Not from a pediatrician's standpoint, but from Dr Goldberg. He says eos should be under 1.5%, and when they are not, aggressive dietary intervention is necessary. While elevated eos's can mean parasitic infections in the GI tract, I think they have to be higher than that. In this range, it is likely dietary, which has not been widely accepted by the mainstream community yet but is heavily supported by science. In a normal typical child without an immune issue like PANDAS, yes, those levels would not be of concern. However, Dr G would be very unhappy with those levels in my kids and would be doing something about it. Don't assume all is well. PANDAS could haunt him for life. That sounds mean-sprited for me to say because one thing I never want to stress an already stressed mom out and make her worry. But I just want to urge you not to take this doctor completely at her word and think all is well, but rather educate yourself on this and be his spokesperson for pro-active care. His symptoms are not resolved and his ASO titer is not down. It still needs to be monitored, and if that doctor doesn't do so, it will be negligence. Sorry. I'm in a very cranky mood after going to the doctor for myself and having to beg for every lab and have the doctor get angry with me for wanting help. I hope I didn't sound too disenchanted with the medical community. LOL!!!! --- base2 <base2@...> wrote: > Well, according to my son's neurologist my son > doesn't have PANDAS. I got some of his blood test > results yesterday. His ASO-titer went down from > around 370 (after 10 days of amoxicillan in late > October) to a current level of 309. > > It does seem that amoxicillan helped with symptoms > (it didn't eliminate them but seemed to help). > > Anyhow, other blood results, according to the Dr., > indicate he doesn't have PANDAS. > > DNA(DS), Antibody - was in normal range > She told me that if this were high that would > be an indicator of PANDAS > > The only abnormalities were: > > Lymphocytes 34.6 (low) reference > range 40-65 > ** Eosinophils 17.5 (high) reference > range 0.00-6.00 > Red Blood Cells 5.22 (high) reference range > 4.0-5.2 > > She said these are just minor. Everything is > basically > normal and I shouldn't worry about it.. > > I'm wondering if anyone else has another take on > this. > Is there anything I should consider from these > results? > Although I'm not questioning my doctor, I wonder if > there's > something I should consider or look further into. > > Thanks for any thoughts on this! > > > > __________________________________ Start your day with - Make it your home page! http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2005 Report Share Posted December 2, 2005 Hi , Don't worry about sounding cranky! I understand your frustration. I still think my son could have PANDAS and in a little while plan to visit my son's ped and ask for another round of antibiotics. Mostly because I just came down with a sore throat and cough at in the middle of this week (right now my voice is like gravel!). So based on my illness I'm going to try and persuade her to prescribe another round. I've read Keflex is good for PANDAS. Perhaps I can get her to let us try it. Keep your fingers crossed! I also think the eosiniphils seem a bit high. It wouldn't suprise me if this were a problem. I'm going to need to look further into think more about digestive enzymes. Thanks for your words! On Dec 2, 2005, at 12:31 PM, wrote: > Hi - > > I could be behind on some of the most current info on > PANDAS, but I believe your child's doctor is > technically wrong on this. If your child's ASO is > elevated and he has onset of OCD and changes ... and > you already said his ASO went down and so did his > symptoms ... this is what PANDAS IS! Dr Swedo herself > (has written the most papers on this from the Natl > Inst of Mental Hlth - part of the NIH) stated that > strictly adhering to the PANDAS criteria is for ** > research purposes **, not for actual diagnosis. > However, the lack of auto-antibodies to some of those > tested in that PANDAS profile are a good sign .. this > has not become a complete autoimmune breakdown. Dr > Goldberg would say yes your child does appear to have > PANDAS and he would provide your child with the safest > yet still aggressive treatments available to help him. > > > With children misdiagnosed with " autism " , there are > lots of cases of neuro autoantibodies, but only a > percentage. Does this mean labs indicate that this > child does not have " misdiagnosed autism " ? No!!! > (Sorry - I'm getting irritated at one more example of > a child not getting treatment they NEED because of > ignorance, closed minds, strict parameters, and I'm > about to get on my soapbox... ) It doesn't mean that > left untreated, these things would happen later ... > they don't know the freakin' time line for this yet! > They haven't even determined other co-existing factors > yet. One child w/ PANDAS could have an elevated sed > rate and positive ANA titer, whereas another may > deplete all their iron and B12 instead of having > auto-antibodies, and that can actually be considered > an alternative " acute phase reactant " in > establishing/meeting criteria for such things as > rheumatic fever in the absence of other markers like > sed rate, ANA titer, and c-reactive protein - but not > many doctors know, remember, or consider that > apparently. > > Before I get too hopping mad, does your child " not > having PANDAS " mean he has no intention of treating > it?? Because if you have trouble down the road with > symptom exacerbations in the absence of visible throat > infections, and the specialist has said your child > doesn't have PANDAS, then you may have trouble getting > him medical care, so I urge you to fight this NOW. > > Your child may already beginning to show signs of > anemia in the high red blood cells *I think* - you > should ask for an Iron panel (including ferriten) and > a B12 & folic acid level. Do it asap so that even if > they're normal now, you will have documentation when > in a year from now they've been depleted. (This is > the ONLY thing that has gotten me medical care > recently was having proof that one year ago my B12 & > Iron were within normal limits and then completely > depleted.) Technically this is probably a good thing > since it's a correctable alternative immune response - > by treating underlying infections. > > When I get my computer fixed and can access my papers > in Word, I will email you a question and answer with > PANDAS experts from the NIMH - at that time I'll > refresh my memory on what exactly they said about kids > not matching all parameters. I'd recommend taking > this back to the doctor. > > BTW - the eosiniphils are very high! Not from a > pediatrician's standpoint, but from Dr Goldberg. He > says eos should be under 1.5%, and when they are not, > aggressive dietary intervention is necessary. While > elevated eos's can mean parasitic infections in the GI > tract, I think they have to be higher than that. In > this range, it is likely dietary, which has not been > widely accepted by the mainstream community yet but is > heavily supported by science. > > In a normal typical child without an immune issue like > PANDAS, yes, those levels would not be of concern. > However, Dr G would be very unhappy with those levels > in my kids and would be doing something about it. > Don't assume all is well. PANDAS could haunt him for > life. That sounds mean-sprited for me to say because > one thing I never want to stress an already stressed > mom out and make her worry. But I just want to urge > you not to take this doctor completely at her word and > think all is well, but rather educate yourself on this > and be his spokesperson for pro-active care. His > symptoms are not resolved and his ASO titer is not > down. It still needs to be monitored, and if that > doctor doesn't do so, it will be negligence. > > Sorry. I'm in a very cranky mood after going to the > doctor for myself and having to beg for every lab and > have the doctor get angry with me for wanting help. I > hope I didn't sound too disenchanted with the medical > community. LOL!!!! > > > > > > > > > --- base2 <base2@...> wrote: > >> Well, according to my son's neurologist my son >> doesn't have PANDAS. I got some of his blood test >> results yesterday. His ASO-titer went down from >> around 370 (after 10 days of amoxicillan in late >> October) to a current level of 309. >> >> It does seem that amoxicillan helped with symptoms >> (it didn't eliminate them but seemed to help). >> >> Anyhow, other blood results, according to the Dr., >> indicate he doesn't have PANDAS. >> >> DNA(DS), Antibody - was in normal range >> She told me that if this were high that would >> be an indicator of PANDAS >> >> The only abnormalities were: >> >> Lymphocytes 34.6 (low) reference >> range 40-65 >> ** Eosinophils 17.5 (high) reference >> range 0.00-6.00 >> Red Blood Cells 5.22 (high) reference range >> 4.0-5.2 >> >> She said these are just minor. Everything is >> basically >> normal and I shouldn't worry about it.. >> >> I'm wondering if anyone else has another take on >> this. >> Is there anything I should consider from these >> results? >> Although I'm not questioning my doctor, I wonder if >> there's >> something I should consider or look further into. >> >> Thanks for any thoughts on this! >> >> >> >> > > > > > __________________________________ > Start your day with - Make it your home page! > http://www./r/hs > > > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute and/or the Parent > Coalition. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Eosinophils are excessively high!! Dr G has conniptions when ours are above 4%. But seriously, this indicates either an opportunistic parasitic or bacterial infection of the gut or, if child is seemingly well, then an high level of food allergies from an over active immune system. Lymohocyte count is a OK - the reference ranges from labs to vary and also you need to look at that in conjunction with the total white cell count and the neutrophil (polymorph) count. Blood work & PANDAS Well, according to my son's neurologist my son doesn't have PANDAS. I got some of his blood test results yesterday. His ASO-titer went down from around 370 (after 10 days of amoxicillan in late October) to a current level of 309. It does seem that amoxicillan helped with symptoms (it didn't eliminate them but seemed to help). Anyhow, other blood results, according to the Dr., indicate he doesn't have PANDAS. DNA(DS), Antibody - was in normal range She told me that if this were high that would be an indicator of PANDAS The only abnormalities were: Lymphocytes 34.6 (low) reference range 40-65 ** Eosinophils 17.5 (high) reference range 0.00-6.00 Red Blood Cells 5.22 (high) reference range 4.0-5.2 She said these are just minor. Everything is basically normal and I shouldn't worry about it.. I'm wondering if anyone else has another take on this. Is there anything I should consider from these results? Although I'm not questioning my doctor, I wonder if there's something I should consider or look further into. Thanks for any thoughts on this! Responsibility for the content of this message lies strictly with the original author(s), and is not necessarily endorsed by or the opinion of the Research Institute and/or the Parent Coalition. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 2005 Report Share Posted December 4, 2005 Thanks for pointing this out. I will have to think more about this and try to figure out the best thing to do. The high Eosinophils bother me because it is more than 2x above " normal " and that seems unhealthy to me. Unfortunately, we're not lucky enough to have Dr. G., but I may try to find a DAN doctor who knows something about this and has ideas on diagnosing and treating it. Thanks again for your reply! On Dec 4, 2005, at 7:26 AM, wrote: > Eosinophils are excessively high!! Dr G has conniptions when ours are > above > 4%. But seriously, this indicates either an opportunistic parasitic or > bacterial infection of the gut or, if child is seemingly well, then an > high > level of food allergies from an over active immune system. > > Lymohocyte count is a OK - the reference ranges from labs to vary and > also > you need to look at that in conjunction with the total white cell > count and > the neutrophil (polymorph) count. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2005 Report Share Posted December 8, 2005 I believe they need to have a Brain Caudette Nucleus Antibody that is a positive titer..not seen in normal children. > > Well, according to my son's neurologist my son > doesn't have PANDAS. I got some of his blood test > results yesterday. His ASO-titer went down from > around 370 (after 10 days of amoxicillan in late > October) to a current level of 309. > > It does seem that amoxicillan helped with symptoms > (it didn't eliminate them but seemed to help). > > Anyhow, other blood results, according to the Dr., > indicate he doesn't have PANDAS. > > DNA(DS), Antibody - was in normal range > She told me that if this were high that would > be an indicator of PANDAS > > The only abnormalities were: > > Lymphocytes 34.6 (low) reference range 40-65 > ** Eosinophils 17.5 (high) reference range 0.00-6.00 > Red Blood Cells 5.22 (high) reference range 4.0-5.2 > > She said these are just minor. Everything is basically > normal and I shouldn't worry about it.. > > I'm wondering if anyone else has another take on this. > Is there anything I should consider from these results? > Although I'm not questioning my doctor, I wonder if there's > something I should consider or look further into. > > Thanks for any thoughts on this! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 Is that a specific blood test? On Dec 8, 2005, at 7:10 PM, friendsofcam wrote: > I believe they need to have a Brain Caudette Nucleus Antibody that > is a positive titer..not seen in normal children. > > >> >> Well, according to my son's neurologist my son >> doesn't have PANDAS. I got some of his blood test >> results yesterday. His ASO-titer went down from >> around 370 (after 10 days of amoxicillan in late >> October) to a current level of 309. >> >> It does seem that amoxicillan helped with symptoms >> (it didn't eliminate them but seemed to help). >> >> Anyhow, other blood results, according to the Dr., >> indicate he doesn't have PANDAS. >> >> DNA(DS), Antibody - was in normal range >> She told me that if this were high that would >> be an indicator of PANDAS >> >> The only abnormalities were: >> >> Lymphocytes 34.6 (low) reference range 40-65 >> ** Eosinophils 17.5 (high) reference range 0.00-6.00 >> Red Blood Cells 5.22 (high) reference range 4.0-5.2 >> >> She said these are just minor. Everything is basically >> normal and I shouldn't worry about it.. >> >> I'm wondering if anyone else has another take on this. >> Is there anything I should consider from these results? >> Although I'm not questioning my doctor, I wonder if there's >> something I should consider or look further into. >> >> Thanks for any thoughts on this! >> >> >> > > > > > > > > Responsibility for the content of this message lies strictly with > the original author(s), and is not necessarily endorsed by or the > opinion of the Research Institute and/or the Parent > Coalition. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2005 Report Share Posted December 9, 2005 Yes. It's a blood test. It was done by Dr. Singh. My son was positive for this and so has an attack on the basal ganglia of the brain...most of the research that I've done shows this attack on this area of the brain to be strep related. Dr. Singh thought also there could be an underlying viral component. Anyways, strep attacks the basal ganglia because the cell is the same size and shape as the strep cell, and the body becomes confused. This same thing can happen in rheumatic fever when strep attacks the heart. I did notice that after my son took a course of sulfatrim much of his hand flapping went down. But, it returned. And he's constantly had sinus problems such as re-curring strep can cause. I know that Dr. G doesn't advise Immuno globulin unless, just by a shot. However, I've considered intravaneaous immunoglobulin as this is the primary treatment for Pandas. Will probably just try a gamma globulin shot first though. I've started some natural methods to try to bring the strep down. But, they haven't done alot for him as of yet. I've recently begun adding Xylitol (a sugar replacement found in health food stores that is shown to reduce strep by 80%- over time in the gut area and etc. We will see how that goes. > >> > >> Well, according to my son's neurologist my son > >> doesn't have PANDAS. I got some of his blood test > >> results yesterday. His ASO-titer went down from > >> around 370 (after 10 days of amoxicillan in late > >> October) to a current level of 309. > >> > >> It does seem that amoxicillan helped with symptoms > >> (it didn't eliminate them but seemed to help). > >> > >> Anyhow, other blood results, according to the Dr., > >> indicate he doesn't have PANDAS. > >> > >> DNA(DS), Antibody - was in normal range > >> She told me that if this were high that would > >> be an indicator of PANDAS > >> > >> The only abnormalities were: > >> > >> Lymphocytes 34.6 (low) reference range 40-65 > >> ** Eosinophils 17.5 (high) reference range 0.00- 6.00 > >> Red Blood Cells 5.22 (high) reference range 4.0-5.2 > >> > >> She said these are just minor. Everything is basically > >> normal and I shouldn't worry about it.. > >> > >> I'm wondering if anyone else has another take on this. > >> Is there anything I should consider from these results? > >> Although I'm not questioning my doctor, I wonder if there's > >> something I should consider or look further into. > >> > >> Thanks for any thoughts on this! > >> > >> > >> > > > > > > > > > > > > > > > > Responsibility for the content of this message lies strictly with > > the original author(s), and is not necessarily endorsed by or the > > opinion of the Research Institute and/or the Parent > > Coalition. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2005 Report Share Posted December 10, 2005 Do you know how much xylitol is rec'd to bring strep down? Do you know why or how it works? Do you buy the gum or does it come in candy type lozenges? I know you can buy it in a powdered form which I use occ'ly. I had never heard that it targets strep, however. We could really use that. Is the test you are refering to the ASO test? Do you know if there is a way of seeing if there has been an attack on the basal ganglia? Would an neurospect show this? BArb --- friendsofcam <friendsofcam@...> wrote: > > Yes. It's a blood test. It was done by Dr. > Singh. My son was > positive for this and so has an attack on the basal > ganglia of the > brain...most of the research that I've done shows > this attack on > this area of the brain to be strep related. Dr. > Singh thought > also there could be an underlying viral component. > Anyways, strep > attacks the basal ganglia because the cell is the > same size and > shape as the strep cell, and the body becomes > confused. This same > thing can happen in rheumatic fever when strep > attacks the heart. > I did notice that after my son took a course of > sulfatrim much of > his hand flapping went down. But, it returned. And > he's constantly > had sinus problems such as re-curring strep can > cause. I know that > Dr. G doesn't advise Immuno globulin unless, just by > a shot. > However, I've considered intravaneaous > immunoglobulin as this is > the primary treatment for Pandas. Will probably > just try a gamma > globulin shot first though. I've started some > natural methods to > try to bring the strep down. But, they haven't > done alot for him > as of yet. I've recently begun adding Xylitol (a > sugar replacement > found in health food stores that is shown to reduce > strep by 80%- > over time in the gut area and etc. We will see how > that goes. > > > > >> > > >> Well, according to my son's neurologist my son > > >> doesn't have PANDAS. I got some of his blood > test > > >> results yesterday. His ASO-titer went down from > > >> around 370 (after 10 days of amoxicillan in > late > > >> October) to a current level of 309. > > >> > > >> It does seem that amoxicillan helped with > symptoms > > >> (it didn't eliminate them but seemed to help). > > >> > > >> Anyhow, other blood results, according to the > Dr., > > >> indicate he doesn't have PANDAS. > > >> > > >> DNA(DS), Antibody - was in normal range > > >> She told me that if this were high that would > > >> be an indicator of PANDAS > > >> > > >> The only abnormalities were: > > >> > > >> Lymphocytes 34.6 (low) > reference range 40-65 > > >> ** Eosinophils 17.5 (high) > reference range 0.00- > 6.00 > > >> Red Blood Cells 5.22 (high) reference > range 4.0-5.2 > > >> > > >> She said these are just minor. Everything is > basically > > >> normal and I shouldn't worry about it.. > > >> > > >> I'm wondering if anyone else has another take > on this. > > >> Is there anything I should consider from these > results? > > >> Although I'm not questioning my doctor, I > wonder if there's > > >> something I should consider or look further > into. > > >> > > >> Thanks for any thoughts on this! > > >> > > >> > > >> > > > > > > > > > > > > > > > > > > > > > > > > Responsibility for the content of this message > lies strictly with > > > the original author(s), and is not necessarily > endorsed by or the > > > opinion of the Research Institute and/or > the Parent > > > Coalition. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2005 Report Share Posted December 11, 2005 I just use the sugar substitute form. I know there is a nasal spray that was made especially to stop strep induced sinus infections with xylitol. The gum is a great idea. I'd use that if he'd let me. I've read several studies about it. However, I guess I've not been very scientific about the amount given. I just sweeten his drinks with it atleast once a day. It seems to have brought his hand flapping down. The only test I know is the blood test to see if the child has developed an anti-body to his own Brain Caudette Nucleus. At which, normal children are always negative. > > > >> > > > >> Well, according to my son's neurologist my son > > > >> doesn't have PANDAS. I got some of his blood > > test > > > >> results yesterday. His ASO-titer went down from > > > >> around 370 (after 10 days of amoxicillan in > > late > > > >> October) to a current level of 309. > > > >> > > > >> It does seem that amoxicillan helped with > > symptoms > > > >> (it didn't eliminate them but seemed to help). > > > >> > > > >> Anyhow, other blood results, according to the > > Dr., > > > >> indicate he doesn't have PANDAS. > > > >> > > > >> DNA(DS), Antibody - was in normal range > > > >> She told me that if this were high that would > > > >> be an indicator of PANDAS > > > >> > > > >> The only abnormalities were: > > > >> > > > >> Lymphocytes 34.6 (low) > > reference range 40-65 > > > >> ** Eosinophils 17.5 (high) > > reference range 0.00- > > 6.00 > > > >> Red Blood Cells 5.22 (high) reference > > range 4.0-5.2 > > > >> > > > >> She said these are just minor. Everything is > > basically > > > >> normal and I shouldn't worry about it.. > > > >> > > > >> I'm wondering if anyone else has another take > > on this. > > > >> Is there anything I should consider from these > > results? > > > >> Although I'm not questioning my doctor, I > > wonder if there's > > > >> something I should consider or look further > > into. > > > >> > > > >> Thanks for any thoughts on this! > > > >> > > > >> > > > >> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Responsibility for the content of this message > > lies strictly with > > > > the original author(s), and is not necessarily > > endorsed by or the > > > > opinion of the Research Institute and/or > > the Parent > > > > Coalition. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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