WornOutDad Posted September 30, 2010 Report Share Posted September 30, 2010 Do any of the other PANDAS children pick up every single bug that is out there? It appears like our DS(14) is covered with glue while at school and every single stinking illness sticks to him no matter what we do. So very frustrating! Once he has picked up any kind of bug, his head goes bonkers on him. Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 30, 2010 Report Share Posted September 30, 2010 I apologize for not knowing this about your son's story - but has he been checked for an immune deficiency already? Getting sick all the time would be a sign of an immune deficiency. You'd need to go to an immunologist for a full battery. We used to discuss this a lot on the board, as quite a few kids did have a deficiency. Let us know if you need the list of tests - I have those somewhere, as we ran them a year ago. Link to comment Share on other sites More sharing options...
WornOutDad Posted September 30, 2010 Author Report Share Posted September 30, 2010 (edited) We have had the full battery of tests run, and they have all come back inconclusive, in fact his immune system is in good shape according to the tests. Edited September 30, 2010 by WornOutDad Link to comment Share on other sites More sharing options...
MomWithOCDSon Posted September 30, 2010 Report Share Posted September 30, 2010 That stinks, Dad. Yeah, schools are petri dishes and some kids are like the agar on a slide, soaking it all up! It really does sound like, in addition to PANDAS, your DS has some sort of immune deficiency. I'm with MegsMom . . . check those tests or have a new panel done, maybe. I know Dr. K. ordered one for us after our first consultation; in our case, our DS has no deficiencies, which would explain why he is rarely ill and even the strep that set off his ASO and AntiDnase-B didn't show up in a classic way. Sounds like your guy could use some immune support, though. Have you tried any of the supplements? Omegas? Probiotics? Vitamin C? Not a wonder-cure, certainly, but they could help to some degree. Link to comment Share on other sites More sharing options...
tapiash Posted September 30, 2010 Report Share Posted September 30, 2010 My son takes liquid silver. He takes 3 or 4 squirts a day. He has not picked up anything so far. neither have my other kids who take it. Link to comment Share on other sites More sharing options...
Megs_Mom Posted September 30, 2010 Report Share Posted September 30, 2010 Huh. Liquid silver is great - have a friend whose daughter got strep 6 time - started silver, fine. We are also aggressive about Vitamin D. I am sometimes surprised when I review old tests by what I see, now that I am fairly educated, and don't have to rely 100% on a doc to read them for me. Link to comment Share on other sites More sharing options...
wornoutmom Posted September 30, 2010 Report Share Posted September 30, 2010 Latest immune work up done just 4 weeks ago. Everything still looks fine. Only thing we caught is still positive for IGg Mycoplasma. Has been positive repeatedly since April. It makes no sense. Doing Vitamin D, omega 3, vitamin c, multivitamin. On 1000 mg of Biaxin since April. Had high dose IVIG in June. Dr is a little confounded. None of it makes sense. Not familiar with choloidal silver. How does that help? Link to comment Share on other sites More sharing options...
tired mom Posted September 30, 2010 Report Share Posted September 30, 2010 (edited) Latest immune work up done just 4 weeks ago. Everything still looks fine. Only thing we caught is still positive for IGg Mycoplasma. Has been positive repeatedly since April. It makes no sense. Doing Vitamin D, omega 3, vitamin c, multivitamin. On 1000 mg of Biaxin since April. Had high dose IVIG in June. Dr is a little confounded. None of it makes sense. Not familiar with choloidal silver. How does that help? We are in same boat with myco. I think we are staring right at the monster and it won't back down. Myco seems indestructible at this point.. Edited September 30, 2010 by tired mom Link to comment Share on other sites More sharing options...
wornoutmom Posted September 30, 2010 Report Share Posted September 30, 2010 tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it? Link to comment Share on other sites More sharing options...
Stephanie2 Posted September 30, 2010 Report Share Posted September 30, 2010 (edited) Both of my boys used to be that way...constant colds that would turn into secondary infections, either ear, chest, sinus or all of the above. also used to react with asthma. getting sick used to be a constant nightmare in this house, no sleep, constant nebulizer, abx, steroids. Here is what we were advised by the DAN and it all turned around within a few weeks... Vit D3 (tested low, should be around 50) Vit C (buffered, high dose 1500 mg for ds2, 2000mg for ds5) gluten and dairy free diet (I think it is the dairy free that helped the most - I did the same and was able to go off all my allergy and asthma meds!!) Methyl B12 shots (this was prescribed for other reasons but I feel has contributed to immune boost) Zinc (tested low) High potency Multi Out of all that I honestly think it was stopping dairy that did it. To this day, when I eat dairy products for a couple days in a row, I start wheezing and feeling like I need to use my inhaler. Otherwise I try to keep dairy to 2 servings a week for myself (none for the kids). DS5 was able to go off singulair and zyrtec, nebulizer, steroids, chronic abx when he stopped dairy. DS2 never even started dairy (but was sick a lot when I was nursing and eating dairy). Now a days when they get sick it is like a blip on the radar...a little congestion at bedtime, a couple sneezes here and there. Not even a runny nose usually! And as far as pandas symptoms, most times I don't see an increase, if I do it's for a couple hours or so. Edited September 30, 2010 by Stephanie2 Link to comment Share on other sites More sharing options...
tired mom Posted October 1, 2010 Report Share Posted October 1, 2010 tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it? The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Link to comment Share on other sites More sharing options...
wornoutmom Posted October 1, 2010 Report Share Posted October 1, 2010 tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it? The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Can I ask what you have tried as far as eradicating it? Link to comment Share on other sites More sharing options...
momcap Posted October 1, 2010 Report Share Posted October 1, 2010 I apologize for not knowing this about your son's story - but has he been checked for an immune deficiency already? Getting sick all the time would be a sign of an immune deficiency. You'd need to go to an immunologist for a full battery. We used to discuss this a lot on the board, as quite a few kids did have a deficiency. Let us know if you need the list of tests - I have those somewhere, as we ran them a year ago. Can I get that list of tests? I need to request a full immune work-up, but if I don't ask for specific tests I don't think I'll get anything useful (as has been my experience so far). Thanks! Link to comment Share on other sites More sharing options...
tired mom Posted October 1, 2010 Report Share Posted October 1, 2010 tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it? The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Can I ask what you have tried as far as eradicating it? 90 days Biaxin,30 days zith,and another 10 days zith(500mg). So my daughter text me today before she got home from college to say the docs office called her (now 18) and says her bloodwork is normal. So I call and tell them to read me her levels. IgG is 3.0 and IgMs are 2036. NORMAL??? So I say "Does it not say high on that lab sheet" to which he responds "yes it does" but the doc has written" Good" on her report. Then he tells me she has the antibodies that show at some point she had mono. No clue when that could have been. TGIF because I need a drink!!! Link to comment Share on other sites More sharing options...
wornoutmom Posted October 4, 2010 Report Share Posted October 4, 2010 tired mom -do you have positive IgMs or just IgGs that wont go away? Our doc doesn't know what to make of it. Not sure if its still active infection or just IgGs that tend to linger. What are your docs saying about it? The IgMs have remained high for a year now. Her doc seems more concerned with the IgMs then the IgGs. I am waiting for results for bloodwork she just had done this week and see where we stand. When we saw Dr. T back in the spring he said he believes she has been dealing with this for a very long time. He refers to it as an acute mycoplasma infection. Can I ask what you have tried as far as eradicating it? 90 days Biaxin,30 days zith,and another 10 days zith(500mg). So my daughter text me today before she got home from college to say the docs office called her (now 18) and says her bloodwork is normal. So I call and tell them to read me her levels. IgG is 3.0 and IgMs are 2036. NORMAL??? So I say "Does it not say high on that lab sheet" to which he responds "yes it does" but the doc has written" Good" on her report. Then he tells me she has the antibodies that show at some point she had mono. No clue when that could have been. TGIF because I need a drink!!! We got the positive mono antibody thing too. Apparently upwards of 90% of the population carries the EBV virus, but it never gets to the infectious mono stuff with many. The thing I gathered from all this is that with multiple virus/bacteria in the system, the immune system is working overtime and cant fight either effectively enough. Link to comment Share on other sites More sharing options...
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