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PANDAS- Permanant Brain Damage? also question about allergies


Guest alyssa

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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.

 

Actually I took natural progesterone pills, (Prometrium)sp? I cannot take birth control with estrogen according to my rhematologist. Estrogen is known to make Sidenhams Chorea worse and since PANDAS is similar I was afraid of any combination pill. I actually have the paragard IUD however I think the mini pill would be okay. I'm sure this subject will eventually come up with your daughter so I'll tell you as much as I know. I stay as far away from estrogen as possible because I have problems in the middle of my cycle and that's when estrogen levels are the highest. (mainly days 11-14). Does your daughter notice this at all? I certainly understand about the misunderstanding. It's my fault. I should have clarified that I have PANDAS. I also get overly defensive and frustrated when I talk about it so I'm sorry as well. I've tried Augmentin but didn't have much luck with it. I used it after I had my tonsils out this past summer. I've had my eye on a new antibiotic that's being developed. It's probably years away yet but it's called Plectasin. It's supposed to VERY effective against resistant strains to strep. I've also kept my eye out for a new drug against lupus (since I was treated as if I had lupus) It's called Benlysta. It's supposed to receive FDA approval this December. I can't really try anything drastic at the moment because I'm leaving for Paris for two years to teach English and I'm currently working on my masters. I don't really have the time to experiment right now except maybe with allergy shots if Dr. Bouboulis can convince me to get them. For the moment, I'm just waiting for the allergy season to end and hope things will calm down a little. They usually do. Does your daughter have a problem during allergy season as well? Just out of curiosity?

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Believe me, I share this fear with others. As you point out, nobody's really sure how much damage is done over a given duration, especially when PANDAS goes untreated. Here's an Australian web site I stumbled across a while back that scared the heck out of me after our son's 2nd exacerbation: http://www.adhd.com.au/PANDAS.htm . The most frightening passage is this one.

 

Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder.

 

I try to find positives from what I've heard from the PANDAS docs, though. Both Dr. K and Dr. L insisted that "these kids recover if they're treated." I keep reminding myself of those encouraging words from docs who've seen a lot of PANDAS children over the years. But - as has been discussed on other threads - I fear it's more a matter of managing an ongoing autoimmune condition rather than an out-and-out cure. And aggressive treatment is certainly critical!

 

 

Worried Dad, Swedo has a video online that shows this exactly, it was her autism video, I believe she did in San diego several years ago explaining her original pandas study. She had an adolescent boy with MRI inflammtion, very evident basal ganglia inflammtion and he had lots of symptoms, he had PEX and the antibodies removed and the next MRI showed a large reduction in inflammation but he saw minimal symptom resolution. He actually had symptoms reappear with no inflammation later. No antibodies, no inflammtion but still symptoms. This is why so many parents have fought so hard on this forum to advocate treatment ASAP for our children. Because we do not know exactly what is happening, but with MRI evident basal ganglia inflammation, this was a very severe case and symptoms did not improve with reduction of inflammtion and removal of antibodies.

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I am an N=1 and haven't read this whole thread, but just to add my one datum about long-term brain damage... I had PANDAS as a kid BAD, for many years (including 2 years as an inpatient), with anorexia nervosa that caused extreme weight loss and everything -- and despite not getting any treatment whatsoever until I was in my late teens, I don't think I suffered permanent brain damage of any consequence. I had detailed brain images taken in my mid 20's to take a look, and they could find nothing unusual about my brain whatsoever. In IQ testing, I did test significantly worse on spatial stuff than in other areas, which the tester said could indicate mild brain damage in that area, but I was still in the average range for these pieces. I am indeed lousy at navigating, but other than that my brain seems to operate at a high level :-). I also have numerous adult family members who had PANDAS and went untreated throughout childhood, and I haven't seen any evidence of lost long-term ability or "baking in" of behaviors. To the contrary, everyone seemed to improve as adults. Pretty much all of us got degrees from Ivy League or comparable schools and have gone on to have successful, highly intellectually and emotionally demanding careers and good relationships, and no long-term anxiety or anything. So if there is long-term damage, I certainly haven't seen evidence of it.

 

The one caveat: my grandmother, who I'm quite certain also had never-treated PANDAS (anorexia nervosa as a child, anxiety and depression, constant chronic sinus infections, etc.) did get Parkinsons in her 80's.

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Now I have read the thread and have a couple of things to add - (1) I never had gross motor issues, so add that to my datum, and (2) re. habits, I would have thought that my OCD and eating disorder stuff would have been pretty baked in after a several year (varying severity) episode, but the truth is that with no "retraining" to speak of, I just lost interest in those habits once I was taking antibiotics and they simply went away over a short period of time.

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Momto2pandas, did u have any tics? Did they resolve? How many episodes or sudden onset attacks do u remeber. Ur background gives us all hope!

I am an N=1 and haven't read this whole thread, but just to add my one datum about long-term brain damage... I had PANDAS as a kid BAD, for many years (including 2 years as an inpatient), with anorexia nervosa that caused extreme weight loss and everything -- and despite not getting any treatment whatsoever until I was in my late teens, I don't think I suffered permanent brain damage of any consequence. I had detailed brain images taken in my mid 20's to take a look, and they could find nothing unusual about my brain whatsoever. In IQ testing, I did test significantly worse on spatial stuff than in other areas, which the tester said could indicate mild brain damage in that area, but I was still in the average range for these pieces. I am indeed lousy at navigating, but other than that my brain seems to operate at a high level :-). I also have numerous adult family members who had PANDAS and went untreated throughout childhood, and I haven't seen any evidence of lost long-term ability or "baking in" of behaviors. To the contrary, everyone seemed to improve as adults. Pretty much all of us got degrees from Ivy League or comparable schools and have gone on to have successful, highly intellectually and emotionally demanding careers and good relationships, and no long-term anxiety or anything. So if there is long-term damage, I certainly haven't seen evidence of it.

 

The one caveat: my grandmother, who I'm quite certain also had never-treated PANDAS (anorexia nervosa as a child, anxiety and depression, constant chronic sinus infections, etc.) did get Parkinsons in her 80's.

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I had really bad motor tics, yes, but no verbal tics. The bad motor tics resolved. I asked my husband if he's ever noticed me to tic (obviously not enough for me to worry about...), and he said that sometimes when I'm listening to someone very intently I blink my eyes "hard in a cute way". My eyes have a tendency to get very irritated (allergies I think), so I notice that I do blink hard sometimes when I'm holding a long gaze and when I'm wearing mascara. Wearing contacts was also murder. Is that a tic? I doubt it, but don't know. In any case, the eye irritation itself bothers me more than any blinking it causes.

 

As for number of episodes, too many to count. I distinctly remember bad stuff coming on in 1st-2nd grade, then felt good in 3rd grade, bad in 4th, good 5th-8th, bad in 9th... once I got into my twenties, the episodes became shorter and happened in clear linkage to acute infection - that's when I was diagnosed to have infection triggered blah blah (before "PANDAS" was an entity). I'd feel depressed/anxious/manic, get sick (sore throat, often fever) within one day after onset of mood stuff, and it would clear up within a couple of days after that. That happened a few times per year until I was somewhere around 30. Not long after that, it became less frequent and more subtle - I'd feel "dragged down" when I got sick, tired, irritable. That still happens sometimes (not every time I get sick), but to be honest, I'm not sure it isn't how normal people feel when they're sick. I had one episode last year in response to a very bad infection and that one had some OCD in it, but that lasted less than a week before I went to the doctor to get a Medrol pack and antibiotics.

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Caveat to the above: that's a very simplified history, just to give you an idea of number of episodes. I had other stuff go on along the way: thyroid issues, pregnancies, medication allergies, etc. - that had impacts as well - but the above was the basic pattern in response to infections.

 

 

Can you explain what happened during pregnancy?? Also how did you deal with allergies. Also what medications have you had problems with?

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Sounds a lot like my dd's pattern of illness she is 14 now. Thanks for the reply.

I had really bad motor tics, yes, but no verbal tics. The bad motor tics resolved. I asked my husband if he's ever noticed me to tic (obviously not enough for me to worry about...), and he said that sometimes when I'm listening to someone very intently I blink my eyes "hard in a cute way". My eyes have a tendency to get very irritated (allergies I think), so I notice that I do blink hard sometimes when I'm holding a long gaze and when I'm wearing mascara. Wearing contacts was also murder. Is that a tic? I doubt it, but don't know. In any case, the eye irritation itself bothers me more than any blinking it causes.

 

As for number of episodes, too many to count. I distinctly remember bad stuff coming on in 1st-2nd grade, then felt good in 3rd grade, bad in 4th, good 5th-8th, bad in 9th... once I got into my twenties, the episodes became shorter and happened in clear linkage to acute infection - that's when I was diagnosed to have infection triggered blah blah (before "PANDAS" was an entity). I'd feel depressed/anxious/manic, get sick (sore throat, often fever) within one day after onset of mood stuff, and it would clear up within a couple of days after that. That happened a few times per year until I was somewhere around 30. Not long after that, it became less frequent and more subtle - I'd feel "dragged down" when I got sick, tired, irritable. That still happens sometimes (not every time I get sick), but to be honest, I'm not sure it isn't how normal people feel when they're sick. I had one episode last year in response to a very bad infection and that one had some OCD in it, but that lasted less than a week before I went to the doctor to get a Medrol pack and antibiotics.

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From 2009 transcript of meeting about vaccines...

 

"This is something too that is important for you to hear, because it is the discovery of how autoimmunity develops by antibodies that aren't damaging, they are signaling. They are signaling in the brain and they are causing disease." Dr. Cunningham

 

I encourage everyone to read the post about the 2009 transcript on vaccines....Cunningham starts on 134...very informative.

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