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Keith and Elizabeth, Oh my gosh, have we been doing this for a year now together. I want to add also that all views are subject to change. Lymes, Strep, Staph, Lupus, Myco. I am not sure if I have found the root cause but I sure will keep searching. Totally agree!!! We have come so far, and we are starting to see progress!

I believe that there is a chance that there may be another issue if the IVIG did not work.

 

We had 2 hdIVIG's and 4 or 5 small dose IVIG's and my feelings are that if we were not getting to at least 80 to 90% and staying there then there is still a chronic issue that we were dealing with....

 

We did do the lyme and coinfection testing in both of my children. My son did have lyme disease, mycoplasma, bartonella and babesia and strep. We decided to stop the IVIG's because I believe that were creating too much herxing and our son was not doing as well. Since we stopped IVIG's 7 months ago and started treating all of the microbes, our son in now in the 90% range.

 

So, my advice to you is that if you did not see great success or sustained success with the one IVIG, then I would test a little further to see if there are some additional infections that your son may be dealing with. My fear is that some of these kids (like my son) may see a temporary success with the IVIG, but it will not last unless the underlying infection is eradicated.

 

Oh, and I just wanted to add that a positive IGG mycoplasma and negative IGM mycoplasma can still do quite a bit of damage and does not definitely mean that the child is not fighting mycoplasma.

 

These are my latest views and they are subject to change as they are continually evolving!

 

Elizabeth

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My doc has treated several pandas kids. Her first was 10 years ago one from the original swedo study. The kids had ivig for approx. 7 to 8 years. Lifelong, maybe just depends on symptoms and blood markers. My dd's ANA is reduced from 2560 to 160 hoping to eliminate it. Her symptoms correlate directly with an elevated ANA, she looks more lupus than Pandas on paper, but her symptoms are only tics and ocd. No other lupus signs. High anti dop 1 antibodies. My doc feels these kids have other autoantibodies some we cannot even measure at this point

 

so you are saying that it may be monthly for 7-8 years, even possibly lifelong?

what state do you live in..where is this doc?

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Hi Im interested in this too.Im a IVIG monthly family too.The last report from our MD was 2-3 years of IVs.Love to read this info.I get the monthly thing,I dont always get tje 1-2 high IVs but EVERY KID IS DIFFERENT..I do get that now.

 

Melanie

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PM me if u r from the midwest.Here's kind of my comparison for this illness. GB comes on strong, is infection mediated and is stopped in its tracks with PEX or IVIG. Can leave some residual weakness though is usually curable and eliminated with one treatment, but patient are told no more vaccines. If it comes on again or in adults is can turn into a more chronic illness called CIDP. Then the only way to eliminate this illness is with an autoimmune dose of ivig every 21 days. Kids apparently don't get CIPD (? CIDP) only GB and its helped with a one time intervention. However adult can get the more chronic cases that never end. So if our kids keep getting re exposed the disease goes into a chronic state just like GB or if our kids pass through puberty then in theory their immune system is "like" an adults and now they have a more chronic autoimmune disease. In GB the triggered is removed by eliminating the flu shots, however being reexposed to any flu then could trigger another attack. Its so similiar, I just don't know if GB is an autonantibody illness also. So could we have PANDAS like GB in children not chronic and also in adults sometimes not chronic. But with re exposure the illness becomes chronic like CIDP. (Hence why kids with immune deficiencies have greater illness and more chronic Pandas becuz of constant rexposure and stress on immune system). I have heard that the older kids are the hardest to get back to baseline with Pandas. Could the condition now be chronic and need to be treated as such? Not one or two ivig's? U know MS never had much luck with ivig either (for last 10 years) until just recently, they up dosage and frequency and they are seeing ivig really help MS now.

My doc has treated several pandas kids. Her first was 10 years ago one from the original swedo study. The kids had ivig for approx. 7 to 8 years. Lifelong, maybe just depends on symptoms and blood markers. My dd's ANA is reduced from 2560 to 160 hoping to eliminate it. Her symptoms correlate directly with an elevated ANA, she looks more lupus than Pandas on paper, but her symptoms are only tics and ocd. No other lupus signs. High anti dop 1 antibodies. My doc feels these kids have other autoantibodies some we cannot even measure at this point

 

so you are saying that it may be monthly for 7-8 years, even possibly lifelong?

what state do you live in..where is this doc?

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Very interesting...especially the last sentence!!

 

PM me if u r from the midwest.Here's kind of my comparison for this illness. GB comes on strong, is infection mediated and is stopped in its tracks with PEX or IVIG. Can leave some residual weakness though is usually curable and eliminated with one treatment, but patient are told no more vaccines. If it comes on again or in adults is can turn into a more chronic illness called CIDP. Then the only way to eliminate this illness is with an autoimmune dose of ivig every 21 days. Kids apparently don't get CIPD (? CIDP) only GB and its helped with a one time intervention. However adult can get the more chronic cases that never end. So if our kids keep getting re exposed the disease goes into a chronic state just like GB or if our kids pass through puberty then in theory their immune system is "like" an adults and now they have a more chronic autoimmune disease. In GB the triggered is removed by eliminating the flu shots, however being reexposed to any flu then could trigger another attack. Its so similiar, I just don't know if GB is an autonantibody illness also. So could we have PANDAS like GB in children not chronic and also in adults sometimes not chronic. But with re exposure the illness becomes chronic like CIDP. (Hence why kids with immune deficiencies have greater illness and more chronic Pandas becuz of constant rexposure and stress on immune system). I have heard that the older kids are the hardest to get back to baseline with Pandas. Could the condition now be chronic and need to be treated as such? Not one or two ivig's? U know MS never had much luck with ivig either (for last 10 years) until just recently, they up dosage and frequency and they are seeing ivig really help MS now.

My doc has treated several pandas kids. Her first was 10 years ago one from the original swedo study. The kids had ivig for approx. 7 to 8 years. Lifelong, maybe just depends on symptoms and blood markers. My dd's ANA is reduced from 2560 to 160 hoping to eliminate it. Her symptoms correlate directly with an elevated ANA, she looks more lupus than Pandas on paper, but her symptoms are only tics and ocd. No other lupus signs. High anti dop 1 antibodies. My doc feels these kids have other autoantibodies some we cannot even measure at this point

 

so you are saying that it may be monthly for 7-8 years, even possibly lifelong?

what state do you live in..where is this doc?

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This is SO interesting!

'nevergiveup' - I think you've come such a long way. And sorry for not "getting it", but what does GB and CIDP stand for?

I've just started seeing an immunologist locally - who is familiar with PANDAS and seems to be all over it. All of this discussion makes me feel like I might be in the right hands.

 

On a side note, have you heard or seen any connection with allergies being part of the issue with the immune system levels...similar to the impact that strep, staph, etc. are having? Allergies seem so "everyday" to me and the others are obviously infections, but I'm just curious. Starting to have this feeling that his "system" is compromised and it seems like his allergies don't help -- may not have been the cause of the initial onset, but might be a constant drain on his system that enable the tics/ocd to linger??

 

Thank you so much for all of the input!

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On a side note, have you heard or seen any connection with allergies being part of the issue with the immune system levels...similar to the impact that strep, staph, etc. are having? Allergies seem so "everyday" to me and the others are obviously infections, but I'm just curious. Starting to have this feeling that his "system" is compromised and it seems like his allergies don't help -- may not have been the cause of the initial onset, but might be a constant drain on his system that enable the tics/ocd to linger??

 

Thank you so much for all of the input!

 

Here is what doc b says, if i got this right, and i tried to ask him several ways....allergies do not create pandas,, he believes allergies create a breading ground in the sinus to bacteria, virus to go and get stuck as sinus does not drain....

i partially buy it, as my ds did not go into pandas day one of allergy season, but about a month in.(end of march typically)..with the current onset 4/6/09..about month before, ds pulled a bald spot about the size of a quarter, by the time onset came..treated scalp with presrip hair wash...(i also think this onset was myco p...as a year later his igg was extremely high and my 3 year old just got tested and his igg was still high to 1 1/2 years later)...this year Feb 2010..1st day of soccer prac...ds goes for a hair...i stopped him dead in his tracks and sent him to the shower!!..did not pull a bald spot this year...but plays with his hair and eyelashes...??????

also, semi related...my sister never had known allergies..we move to burbs, she starts passing out..they do ekg's mri's you name it...it took 2 years to figure it was allergies..once she started shots it stopped....she didn;t have watery eyes, no stuffy nose, nothing...BASICLY it was just causing inflammation...a main problem for our kids......so i don't know

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Guillian Barre Syndrome (spelling?). It is an immune reaction against vaccines and flu's and infection. Attacks come on very quickly over a week like in Pandas, Except in GB they think the immune system is attacking the Schwann cells, in the myelin causing sudden paralysis and weakness, where with Pandas it is the basal ganglia. MS however is a different mechanism than GB.

 

This is SO interesting!

'nevergiveup' - I think you've come such a long way. And sorry for not "getting it", but what does GB and CIDP stand for?

I've just started seeing an immunologist locally - who is familiar with PANDAS and seems to be all over it. All of this discussion makes me feel like I might be in the right hands.

 

On a side note, have you heard or seen any connection with allergies being part of the issue with the immune system levels...similar to the impact that strep, staph, etc. are having? Allergies seem so "everyday" to me and the others are obviously infections, but I'm just curious. Starting to have this feeling that his "system" is compromised and it seems like his allergies don't help -- may not have been the cause of the initial onset, but might be a constant drain on his system that enable the tics/ocd to linger??

 

Thank you so much for all of the input!

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Too many acronyms. It would be more significant if it was Group B strep. But I was refferring to Guillion Barre Syndrome. Immune system attacks schwann cells which make myelin. The similarities are the sudden onset, children do not get chronic condition, infection or vaccine triggered, and it is eleviated from PEX and IVIG. Also reexposure to vaccine or infection could trigger another attack. Sorry for all the confusion. Where are the real scientists like Buster. Looking for any comments!!!

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Melanie, Don't u mean every 21 days. Every 28 days is for immune def's, every 21 days is for autoantibodies. U know I mentioned the turning back of the pages to Dr. L and she looked at me like I didn't know what I was talking about. She said that some ivigs create a large immune response (fever etc..) Which of course will cause an increase in Pandas symptoms, just like any other time u stimulate the immune system. My dd does not do well when she gets a fever from ivig. Her panda symptoms flair. This is why she cannot have the super high doses. I guess time will tell if we need to move that direction, but for now, she is happy with medium doses every 21 days.

Hi Im interested in this too.Im a IVIG monthly family too.The last report from our MD was 2-3 years of IVs.Love to read this info.I get the monthly thing,I dont always get tje 1-2 high IVs but EVERY KID IS DIFFERENT..I do get that now.

 

Melanie

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We just completed Lauren's 3rd ivig last week. Besides some anxiety issues still remaining I am happy to report Lauren is 98% functional. Her sneezing tic and eye flicker are gone. I will say we had problems with her briefly flaring with tics when she is exposed to viruses/bacteria but for the most part is doing great! We will continue ivig every 8 weeks starting first week of October as Lauren is immundeficient and we are trying to keep her well. I also may be doing ivig for my chronic neuro Lyme...to be continued

Edited by laurenjohnsonsmom
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