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hi....my daughter was totally "normal/healthy" until march of this year when she got strep and the PANDAS began....it has been horrible and she is STILL not back to normal....she gets a little better each week, but I never thought that at the start of June we would STILL be dealing with this....anyways, she is back to "normal" and has improve a ton EXCEPT she still has anxiety and still can't go to school without me there and she now thinks she is swallowing chemicals, soap, etc. ....this is A LOT better than when she started this in march, but i'm wondering if this is as far as she is going to progress???? if anyone is up to it can you let me know ....1. if your child returned to being the way they were before an episode and if not what are you dealing with still......and 2.what treatments have you done or doing ...including supplements/vitamins

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Hi MichiganPs, Yes, absolutely our d came back to "normal" or "baseline" as it is sometimes referred to--

 

Three years ago, our older d had a very severe OCD sudden onset episode and once we settled on giving her continual antibiotics (and with her Amoxicillan, at "full-strength" as if she had strep) worked--We saw obvious improvements within 48 hours initially (more then once that first year--as we first gave only 10 days worth, each time she got ill and started having Ps symptoms.) Finally figured out that if we kept her on it for an extended period of time that she got better and better--So she was on:

Amoxicillan

and 1000mg of each of these: vit. C, D, Omega 3 EPA to DHA ratio of about 4 to 1, so more EPA--from Nordic Naturals, eventually changed to Flaxseed Oil w/ about the same amount of EPA as she had some ticcing that seemed to worsen w/ fish oil omegas.

 

After 7 months of fairly steady and obvious healing/improvement on this regime she began to plateau. After 2 months of no obvious improvement we tried a steroid burst for 3 weeks, and she literally bounced back to 110%. It was a remarkable effect.

 

She was then GREAT for over a year, good grades, NO OCD, no ticcing, etc. Until last summer when she was exposed to strep--and flaired. (I was, at the same time, trying to cut back on her Amoxicillan.) She had a moderate episode and she was treated again with a steroid burst which helped rid her of the obvious OCD, though intrusive thoughts remained. They have continued to diminish to about 96% "OK"...

 

I hope this helps--If it is Pandas I do believe they can be treated and make a full recovery. You may need to work on "habits" or learned responses, but the physical causes, I still think, can be treated successfully.

 

ps--we just had IVIG for our younger d, for her the steroid bursts were not effective. It appears that she is doing better--saw-tooth, but better.

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My son did get back to baseline and has been in full remission since for about 20 months. All I can say is it can be a long recovery. There were times when he was better then he would go ahead and do something that would positively surprise me. I didn't realize there was still a lingering apprehension about something. For some kids, I think there can be residual symptoms that linger but do not have have to be permanent. There just becomes a shift when you as the parent goes from waiting for the remaining PANDAS symptoms to fade, to tackling them head on. That's at a time whne you feel your child is stronger,reasoning has returned and you as the parent has enough strength to do that as well.

 

If your child's original onset was in March, it may seem like a long time, but it actually is not. Recovery can take awhile. If you continue to see some improvements, you're still healing.

 

My son currently takes a prophylactic antibiotic (but is not necessary to maintain remission), a daily probiotic, a multivitamin, and Omega 3 through fish oil. I continue with the Omega 3's even though he is well since he does get severe OCD in an exacerbation and I want the fish oil to remian part of his daily routine since if he gets sick he may refuse to add or change anything and I believe the Omega 3 would be beneficial during that time.

Edited by Vickie
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thanks so much to both of you for explaining your situations...also, vickie ...i love that you underlined that it does not have to be permanent (this is what has been scaring me).....she is not on antibiotics right nor have we tried the steroid burst....so those are at least options...right now i'm so greatful to be where we are, but constant anxiety and me going to school with her and intrusive thoughts is truly nothing to brag about.....we just need to tackle those and that's where i'm left worrying which direction to go.

again, thanks...it helps to hear that others have returned to "baseline" :)

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Hi,

 

 

The first episode my son had, he was not treated with antibiotics (actually he was given an antifungal, not antibacterial medication) but he still improved over 5 months. At his second episode, he was given antibiotic and his healing was MUCH faster- a couple of weeks. His third episode was more drawn out and complicated with chronic OCD that we hadn't recognized as such. But, he was better after treatment and about two months. So, it doesn't have to be permanent. My son responds very quickly to treatment though. It depends on the child and the treatment.

 

 

 

 

 

 

 

 

 

 

hi....my daughter was totally "normal/healthy" until march of this year when she got strep and the PANDAS began....it has been horrible and she is STILL not back to normal....she gets a little better each week, but I never thought that at the start of June we would STILL be dealing with this....anyways, she is back to "normal" and has improve a ton EXCEPT she still has anxiety and still can't go to school without me there and she now thinks she is swallowing chemicals, soap, etc. ....this is A LOT better than when she started this in march, but i'm wondering if this is as far as she is going to progress???? if anyone is up to it can you let me know ....1. if your child returned to being the way they were before an episode and if not what are you dealing with still......and 2.what treatments have you done or doing ...including supplements/vitamins

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We were caught early. Treated with antibiotics about 2 weeks or so after onset. Then the second and third time was treated with antibiotics within 12 hours of onset, however, the extremely fast treatment still got us bad, debilitating symptoms. The second onset, caught within 12 hours of onset was actually worse than the first and we did a 5 day steroid burst with that one which did help with overall recovery. Perhaps the timing of the burst had something to do with it? He was given the burst 5 days after starting antibiotics. The third time, again caught within 12 hours of onset still got us residual OCD to overcome. I should add, though, that he was NOT on prophylactics with any of those exacerbations. Maybe if he was the severity wouldn't have been so bad? No way of knowing. He also had tonsils and adenoids removed a month before the third strep infection/exacerbation.

 

We did not do IVIG.

Edited by Vickie
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DS recovered about 85% after first episode w/out any treatment (because no one knew what was wrong w/ him). He went about two months doing pretty well and then another episode. He never got over the 2nd episode w/out treatment. 7 months later, after 2nd episode, he was diagnosed and put on long term abx. Six months of abx later, he had done better but was not getting back to his normal. He was maybe 70% better. At that point, we did IVIG. 3 wks post IVIG, he is doing so well we are amazed. He's better than he's been in 2 years.

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The closest we've gotten back to "normal" since our first exacerbation(5/2009) and dx (1/2010) is somewhere around the 90% mark. Although, our son has been on abx for 15 of the 18 months since his dx (varying doses) and he's still managed to get strep at least 8 times (4 positive cultures, 3 impetigo, 1 nasal). He improves significantly each time, our bigger issue at this point is the constant re-infections that we're always fighting. Just as we get close...BAM infected again!!!

 

Our residual symptoms have always been OCD in nature, and some seperation anxiety. We've been using CBT/ERP therapy to counteract that, and it has helped (when he's healthy).

 

It's been explained to us by the various members of our medical team this way - our son is so young, (only 3 1/2), and kids are forming so many new neural pathways every day, that the OCD compulsions/anxieties become "normal" for him. For example, stopping to line up all the trains as we leave day care was a huge compulsion for us - if we didn't do it, he raged until he fell asleep at bedtime. As he got better, he still needed to do this every day - the axiety level wasn't there, he just knew that he ALWAYS lined up the trains when he left school - like washing your hands after using the restroom, ingrained behavior. He didn't know why he did it, just that he did, and if he didn't he remembered feeling bad. (Like a drug addict, the drug no longer makes you feel good - you just take it to keep you from feeling "bad".)

 

The CBT/ERP have been very helpful in getting us from the 80-85% recovery we were at, to 90%+ and still improving - until another positive strep test in Februrary, and 2 impetigo infections and nasal infections in the subsequent 3 months...

 

While we've taken a step backwards with therapy with the latest infection, it has given us tools to continue to use, and we've even been able to tell when he's been on the upswing because the techniques don't work AT ALL when he's in full blown exacerbation, but seeing one of the therapy techiniques work on an OCD behavior that we had already tackled (that comes back with exacerbation) is one of the first signs we see now of healing...even quicker than some of our other signs.

 

We were lucky to find a therapist who understands PANDAS (she's out of the Rothman Center where Dr. Murphy and Storch are located), but even one that specializes in OCD might be helpful...

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We were lucky and got back to close to 100% in the first onset with "ignorant abx" for a ear infection. The next 2 episodes were untreated, and both receeded about 85%, but her baseline was climbing rapidly, and it was getting harder to see the exacerbations - she was looking more and more like a kid with OCD. However, even untreated for about 14 months with 3 episodes in that time frame, she has been able to get back to 100%, and is now maybe better than most kids because of the tools she has at her disposal. We only used abx (no IVIG at this point, not ruled out) and ERP therapy for both functioning and healing. Once we started abx, we were back to 80% within a few weeks, and then it just took a while of healing to get back to normal. But if there was any "damage", she is still young enough to build new pathways - either way, getting back to 100% is possible. I do think each child's underlying immune system is part of the picture, and that we are lucky that she is so healthy overall.

 

I still dread another onset. Even today, with almost 2 years of healing, and a happy healthy child, while I don't post much, I read and think about PANDAS daily. It has changed our lives forever. Most of my best friends are PANDAS parents. We just have a different way of looking at life.

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