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PANDAS- Permanant Brain Damage? also question about allergies


Guest alyssa

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U can believe what u want. But inflammation causes brain damage sometimes. No doc will question that. Therapy physical and emotional can retrain someones brain. Ever see the monk study done about positive thoughts???? I do not understand why u think inflammation cannot cause neuron damage. Even migraines are seen on mri's. Why is this such a hard concept. Read my thread on Swedo's study, with the mri of the adolecent boy who had pex, had no more antibodies, no more mri inflammation and still had symptoms.

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important after any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

 

 

It's a hard concept to believe because I've struggled with the illness for 12 years of my life. I'd personally like to think I don't have brain damage.

 

How do you retrain someones brain?

 

 

Furthermore, perhaps PEX didn't work for all kids the first time because the extent of their inflammation was all different. There have been cases where PEX needed to be followed with IVIG/steroids because the inflammation was so severe. Kids might still have symptoms due to environmental triggers. Even I still have problems with PANDAS sometimes, but I can correlate it exactly to an environmental trigger. (sickness/ allergies) Symptoms disapear right after the infection. - sometimes a steroid burst is needed.

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U can believe what u want. But inflammation causes brain damage sometimes. No doc will question that. Therapy physical and emotional can retrain someones brain. Ever see the monk study done about positive thoughts???? I do not understand why u think inflammation cannot cause neuron damage. Even migraines are seen on mri's. Why is this such a hard concept. Read my thread on Swedo's study, with the mri of the adolecent boy who had pex, had no more antibodies, no more mri inflammation and still had symptoms.

Why do some kids after years of symptoms walk out of pex with no tics and others do not see symptom resolution for years. Leckman, also has a study showing kids with gross motor skills issues seem to have more long term issues with tics and ocd. What caused the gross motor skills issues and why did they not resolve. Retraining the brain is important after any brain assault, whether it be a concussion, stroke, MS etc..... and PANDAS. I know cunningham does not State that there is no damage to the brain that could be caused from the inflammation. No doc can tell you that brain inflammation NEVER causes damage. Sometimes it does and sometimes it doesn't, retraining the brain after any assault is KEY.

 

 

However putting my personal history with PANDAS aside and reading Sweedos study, antibodies can be produced for four to six weeks after an infection right? That I'm not sure of but it's what I read. Therefore if PEX is given at a time when the body is still producing a large amount of antibodies, removing them wouldn't do anything if the same amount were being made. I mean I'm obviously not a doctor either but it makes sense doesn't it? Do you know what happened with the boy? did he ever get well?

 

 

It's a hard concept to believe because I've struggled with the illness for 12 years of my life. I'd personally like to think I don't have brain damage.

 

How do you retrain someones brain?

 

 

Furthermore, perhaps PEX didn't work for all kids the first time because the extent of their inflammation was all different. There have been cases where PEX needed to be followed with IVIG/steroids because the inflammation was so severe. Kids might still have symptoms due to environmental triggers. Even I still have problems with PANDAS sometimes, but I can correlate it exactly to an environmental trigger. (sickness/ allergies) Symptoms disapear right after the infection. - sometimes a steroid burst is needed.

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The question was not whether these kids will have long term effects, it was whether they have "brain Damage" And yes brain damage can heal or be redirected to other parts of the brain. I beleive there is no doubt that these kids could (15%) have long term illness. Dr. L and Swedo still have kids in their mid 20"s suffereing from relapses. Some people have pandas and have life long debilitation. Ever read the Turkish PEX study. Treat ur kids and get the best docs, help them heal and prevent reinfection. This illness can be debilitating and life long. We now have better treatemtns and better docs, so we do not know what our kids future holds. But I completely disagree with u that we do not have long term data, again look at the Turkish PEX study.

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Peglem, Completely agree, thats what I am banking on for my kid. Healing. Healing from her brain assault. But more key is preventing future attacks. Becuz I do beleive the kids can heal from the brain damage, but preventing future attacks is sooooo key to their long term success.

Edited by nevergiveup
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Peglem, Completely agree, thats what I am banking on for my kid. Healing. Healing from her brain assault. But more key is preventing future attacks. Becuz I do beleive the kids can heal from the brain damage, but preventing future attacks is sooooo key to their long term success.

What is recommended for preventing future attacks? Anything besides prophylactic abx?

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Not u, airail95 said that there is no long term data.

 

I didn't know it was you, u are referring to. Ok, so now I better understand what ur question was. I am never sure if it is a mother listening to a doc that is saying do not treat, and the disease is self limiting and will not hurt their child. I am not up to date on everyones history. What treatments have u received?? What sucesses have u had? Which doc do u see? What are ur symptoms?

 

.

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Peglem, Completely agree, thats what I am banking on for my kid. Healing. Healing from her brain assault. But more key is preventing future attacks. Becuz I do beleive the kids can heal from the brain damage, but preventing future attacks is sooooo key to their long term success.

What is recommended for preventing future attacks? Anything besides prophylactic abx?

 

Because my PANDAS case was so severe and debilitating, I always had to be on antibiotics after being treated at NIMH. I was on penicillin back in 1998 for a while, then I was on amoxicillian, then zythromax (sp) (however I had repeat sinus infections on Zithro and sinus infections exacerbate PANDAS)so now I'm on Ceftin. I did have sinus surgery and my tonsils and adenoids out to remove all possible triggers for PANDAS. I haven't gotten strep in over 12 years. I also take a combination of anti oxidants that work very well for me. Make sure you eat healthy and exercise as well. The supplements I take are: D-Hist Fish Oil- Tumeric Probiotic- 1 advil a day- Vitamin B complex and zyrtec.

 

Also you should know that Allergies are a huge trigger for PANDAS. This august I've had a lot of problems because I have very sever allergies. I am going to talk with Dr. Bouboulis and will possibly get allergy shots. I will let you know if that helps or causes any problems.

Edited by alyssa
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Do u feel u are in remission? Allergies definately increase panda symptoms, may be stuffy nose causing more strep in the nose area? Have u ever done ivig or pex? Do u feel ur symptoms are manageable with ur treatments? What type of exercise do u recommend?

 

 

Peglem, Completely agree, thats what I am banking on for my kid. Healing. Healing from her brain assault. But more key is preventing future attacks. Becuz I do beleive the kids can heal from the brain damage, but preventing future attacks is sooooo key to their long term success.

What is recommended for preventing future attacks? Anything besides prophylactic abx?

 

Because my PANDAS case was so severe and debilitating, I always had to be on antibiotics after being treated at NIMH. I was on penicillin back in 1998 for a while, then I was on amoxicillian, then zythromax (sp) (however I had repeat sinus infections on Zithro and sinus infections exacerbate PANDAS)so now I'm on Ceftin. I did have sinus surgery and my tonsils and adenoids out to remove all possible triggers for PANDAS. I haven't gotten strep in over 12 years. I also take a combination of anti oxidants that work very well for me. Make sure you eat healthy and exercise as well. The supplements I take are: D-Hist Fish Oil- Tumeric Probiotic- 1 advil a day- Vitamin B complex and zyrtec.

 

Also you should know that Allergies are a huge trigger for PANDAS. This august I've had a lot of problems because I have very sever allergies. I am going to talk with Dr. Bouboulis and will possibly get allergy shots. I will let you know if that helps or causes any problems.

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Not u, airail95 said that there is no long term data.

 

I didn't know it was you, u are referring to. Ok, so now I better understand what ur question was. I am never sure if it is a mother listening to a doc that is saying do not treat, and the disease is self limiting and will not hurt their child. I am not up to date on everyones history. What treatments have u received?? What sucesses have u had? Which doc do u see? What are ur symptoms?

 

.

 

 

October 1998- Ear infection- 6 weeks later developed OCD. At the time PANDAS was basically unheard of so doctors treatments me with SSRI's which more or less made me absolutely crazy.

 

February 1999- Developed a strep infection, OCD was off the wall and developed tics (very debilitating)

 

treatment 1- (age 10) Steroid Burst for about a month- Helped but no where near enough. I was still more or less handicapped

treatment 2- IVIG- had a huge exacerbation of symptoms at first and then slowly improved but again it was still no where near enough.

treatment 3 Pulse Steroids- That was the treatment that put me into remission. The rhematologist treated me as if I had lupus because the two diseases are similar.

 

This is why I question what you posted about sweedo's study because it took 3 HUGE immuno-suppressive treatments to get me well. I don't mean to attack you in any way. I don't want it to come off as that.

 

In college I had trouble dealing with PANDAS, so i stopped taking all antibiotics and vitamins while trying to cope with the fact that I have an autoimmune disease. (didn't want to believe it etc) Looking back now that was extremely stupid. I had repeat sinus infections because I didn't take the zithro like I should of and my symptoms worsened. I had sinus surgery and haven't had an infection since. I also had my tonsils and adenoids out. I'm well. I'm not where I was after the repeat sinus infections but still fine. I might have another round of steroids to calm things down from the repeat infections. I'll have to see how things go this year. I live a normal lie. I graduated college with honors this year(didn't need an IEP after middle school) I have symptoms when I'm sick and a lot of symptoms during allergy season. I'm going to an immunologist in October to try and understand PANDAS better.

 

Things I take now:

D-hist

B Complex

Tumeric

Fish Oil

Probiotic

1 advil a day

Ceftin- 250 daily

Zyrtec - Might have to switch to Zxyal because I'll be living in Europe and Zyrtec has been discontinued.

 

I am contemplating allergy shots.

 

My tics flare up in the middle of my menstrual cycle, during allergy season, and when I get sick. I only noticed the problem with my menstrual cycle when I was not taking the vitamins to reduce the inflammation. When I started taking better care of myself again, it was much less noticeable however natural Progesterone did help me.

 

I also stay the heck away from vaccines and flu shots.

 

 

Dr.s I saw: Dr. Triffelti, Dr. Karen Onel, and I'm going to see Dr. BouBoulis in October for the allergy problem.

Edited by alyssa
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Wow, sorry. I have the same guilt. Everyday

Nevergiveup - reading your answer makes me sick to stomach because I know that you are right. You are saying what no one wants to believe. You are making real everyone's most real fear. I know at least in the back of my head I think to myself, "Did I catch it to late?" "Has to much time gone by?" "Have I failed to save him?"

 

You hit the nail on the head.

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I absolutely do not agree with one treatment, I am with u there. U and my dd have very many similarities, first she is one smart girl, (like u) and second she also has a lupus like illness and has been on multiple doses of steroids from her rheum (age 10 thru 12 like u. She had her fist ivig and regressed but laterimproved. She has had over 41 sinus infections and now gets ivig every 21 days to prevent infection and to target her antidopamine antibodies. She is now 14 and still has some tics and I believe is now suffering a little from PTSD from all the docs and the fear of another attack. I would highly recommend trying apri or myrcet birth control it is a high progesterone birth control pill that offers some brain protection too. If the cream helped the pills may be great. I am sorry for thinking u were a mother, we can all learn so much from u and ur experience. And no u do not have permanent brain damage, u in most docs eyes would be a success story. If doc b finds an immune def would u consider monthly ivig? Ur supplements are great, my dd takes them all except the tumeric. Have u ever tried augmentin, they say it helps with tics? Thanks for sharing, and I hope u can understand my misunderstanding, so many moms are currently told mis truths by their docs and believe them. I get frustrated when I think that kids are not receiving proper treatment.

Not u, airail95 said that there is no long term data.

 

I didn't know it was you, u are referring to. Ok, so now I better understand what ur question was. I am never sure if it is a mother listening to a doc that is saying do not treat, and the disease is self limiting and will not hurt their child. I am not up to date on everyones history. What treatments have u received?? What sucesses have u had? Which doc do u see? What are ur symptoms?

 

.

 

 

October 1998- Ear infection- 6 weeks later developed OCD. At the time PANDAS was basically unheard of so doctors treatments me with SSRI's which more or less made me absolutely crazy.

 

February 1999- Developed a strep infection, OCD was off the wall and developed tics (very debilitating)

 

treatment 1- (age 10) Steroid Burst for about a month- Helped but no where near enough. I was still more or less handicapped

treatment 2- IVIG- had a huge exacerbation of symptoms at first and then slowly improved but again it was still no where near enough.

treatment 3 Pulse Steroids- That was the treatment that put me into remission. The rhematologist treated me as if I had lupus because the two diseases are similar.

 

This is why I question what you posted about sweedo's study because it took 3 HUGE immuno-suppressive treatments to get me well. I don't mean to attack you in any way. I don't want it to come off as that.

 

In college I had trouble dealing with PANDAS, so i stopped taking all antibiotics and vitamins while trying to cope with the fact that I have an autoimmune disease. (didn't want to believe it etc) Looking back now that was extremely stupid. I had repeat sinus infections because I didn't take the zithro like I should of and my symptoms worsened. I had sinus surgery and haven't had an infection since. I also had my tonsils and adenoids out. I'm well. I'm not where I was after the repeat sinus infections but still fine. I might have another round of steroids to calm things down from the repeat infections. I'll have to see how things go this year. I live a normal lie. I graduated college with honors this year(didn't need an IEP after middle school) I have symptoms when I'm sick and a lot of symptoms during allergy season. I'm going to an immunologist in October to try and understand PANDAS better.

 

Things I take now:

D-hist

B Complex

Tumeric

Fish Oil

Probiotic

1 advil a day

Ceftin- 250 daily

Zyrtec - Might have to switch to Zxyal because I'll be living in Europe and Zyrtec has been discontinued.

 

I am contemplating allergy shots.

 

My tics flare up in the middle of my menstrual cycle, during allergy season, and when I get sick. I only noticed the problem with my menstrual cycle when I was not taking the vitamins to reduce the inflammation. When I started taking better care of myself again, it was much less noticeable however natural Progesterone did help me.

 

I also stay the heck away from vaccines and flu shots.

 

 

Dr.s I saw: Dr. Triffelti, Dr. Karen Onel, and I'm going to see Dr. BouBoulis in October for the allergy problem.

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I have homework, can't read all of the replies, but I thought I'd throw my two cents in.

 

I'm no doctor & no, I don't have any links to send you to back me up, but I really think that it could/does. I say this because IVIG doesn't always bring kids back 100%. That, & for those of us who've been dealing with P.A.N.D.A.S. for a decade or more have some very real lasting symptoms even when we're not infected. Whether this is the neuronal pathways becoming retrained or actual brain damage, I don't know. I have heard of PET scans showing brain damage in the Globus Pallidus, Thallamus, & Basal Ganglia, but I have also heard of people going untreated for eighteen years & experiencing a full recovery. Overall, I just think that P.A.N.D.A.S. is such a varying disorder that we shouldn't put forward that it DOES or DOESN'T cause brain damage. Obviously there are lasting effects in some & not in others. I think that it just depends on how long the person has been left untreated, the severity of their antibody onslaughts, & just how perseverant their body is.

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Heck - for all we know, there isn't any apparent brain damage - but 50+ years from now we'll start seeing a correlation between PANDAS kids and early onset Alszhimers or something as a result of damage caused by the PANDAS that no one ever knew was there. The bottom line is that I just don't think anyone really KNOWS at this point - so all we have are various dr's theories based on what they've seen so far.

 

 

great point.

 

BUt I was acutually hoping for more of the opposite effect...that all those years of Azith. Advil, IVIG, fish oil we give our kids might have some protective effect against Alzheimers. :wacko:

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