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What does recovery look like?

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I would love to hear your recovery stories. Did your child ever go back to being his/her "old self?" How long did it take? Was your child in a state of semi-recovery for a while? What do you think was the most helpful thing for you?

 

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Here's a little bit of DS10's story: He came down with strep in October and burst out in a bunch of typical PANDAS symptoms (general anxiety, separation anxiety, hallucinations, irrational fears, emotional lability, rages) right as we were ending the antibiotics. A second round of antibiotics (10 days) took care of most of the really weird stuff.

 

He has had one flare following a bout of gastroenteritis and had a "baby flare" last week when his brother was coming down with walking pneumonia (myco p). The first flare was characterized by raging/anorexia/anxiety--and he got suspended from school for an altercation. The baby flare was "just" lots of rages aimed at me.

 

But most days, he does well. His behavior could be considered completely normal--for a different child. He still has a million friends and is his charming self with them. He is generally able to keep his act together at school.

 

It's just that ... he is not exactly the same as he was before. He has outbursts at the slightest provocation several times a week. He is also super-forgetful and has a hard time concentrating on anything remotely challenging.

 

Also: He seems to have plateaued. If he's getting better, it is gradual.

 

Right now he's not on antibiotics but is taking some fancy Omega 3's, Vitamin C and 5-HTP. I give him Motrin sometimes too. I had titers run two weeks ago but I have not been able to get my doctor's nurse to call me back, which is making me pull my hair out in frustration.

 

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My son is better than he was before this all hit. But it took 5 yrs to get to this point. This isn't to discourage you. We thought we were only dealing with strep. But it turned out he also had lyme, so the first 2 yrs of treatments weren't fully effective because we weren't covering all bases.

 

In addition to strep and lyme, we also ended up treating pyroluria, mold, yeast and methylation issues. So healing was a matter of peeling away layers of an onion. Each time we hit upon something and treated it, he moved forward. When we pursued something that wasn't an issue (e.g. metals) we saw no change. So his response told us whether we were onto something.

 

The way I see PANS in hindsight is that before any infection entered the picture, DS had nutritional/methylation deficiencies. This caused him to get sick all the time, catch every bug at daycare and take twice as long to recover. Sometimes he'd exhibit behavioral issues when he was sick, but I'd never heard of Pandas back then.

 

Then when he was 5, he was bitten by a tick on his scalp. I didn't appreciate the risks and never looked for any sort of rash under his hair. A month later, he was very erratic in his behaviors and anxiety was sky high, but then it subsided and I never made the connection to the tick. Didn't realize that lyme can cause neuropsych symptoms. Then a few months later, he got strep for the first time. I think his body was already nutritionally deficient (from pyroluria and methylation defects), he had inflammation from his mold "allergy" and his immune system was already fighting lyme. So strep was the straw that broke the camel's back. Treatment started with strep, But we ended up working backward, making progress each time we eliminated one of the "perfect storm" contributors.

 

So what did recovery look like for DS? It was very saw-tooth. Two steps forward, one step back, until we removed or detoured around another roadblock. Now that I "think" we've done that, DS is in a better place than he was before all this started, because we've addressed many of the issues that led to the cascade of collapse in the first place.

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My son has not gotten back to his baseline of June 2012; but he's a complicated kid with a bunch of issues, so it's not a simple case (are any of these simple?)

But -- as far as progress -- we saw a play yesterday and he was able to sit through and enjoy (i think) the whole thing. When we went to a play in august, when he was in the throes of extreme PANS rages, we had to leave because he ran out screaming and shrieking. By November, the rages had pretty much stopped, but he was off the charts hyper and when we tried a play, we had a leave because he couldn't sit still. Yesterday was a success.

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we expect issues of various kinds to continue throughout their lives. but we also expect them to be more manageable.

i don't think recovery means complete healing at least in our case. i wouldn't even know what that would mean exactly since they had issues before the first big flare. here too, our kids today are better than they ever were.

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I also no longer expect my dd to never have a more complicated emotional life than a completely healthy neurotypical child,

a child who never had PANS.

However, my dd was seemed to struggle more from birth (colic.)

We were never 'normal, 100%, then woke up a different child.'

Having said that,

we are no longer in debilitating, dark days,

she behaves 100% beautifully in her typical 3rd grade public school,

and has no accommodations.

We no longer treat her medically for infections,

or prophylactic.

It is not easy. She can 'pass' in the outside world, so far.

But there are issues.

We are taking it one day at a time.

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Our older son was neurotypical until PANS at age 5 1/2. He was only on antibiotic once prior PANS at age 4. Strep, annual vaccinations and a virus all in a three week period triggered his cascade that lead to PANS. He too had multiple issues: chronic infections/viruses: Lyme, Bartonella, Babesia, Coxsackies, HHV6, yeast, biofilms, heavy metals, mold, vitamin/mineral deficiencies, methylation/detox issues. We did not find anyone thing to be the panacea with regards to treatment however all of it added to his overall successes.

 

To most he appears to be a perfectly normal child. To us, he has maintain a 90% baseline or better for the last couple years. His symptoms today are predominately physical in nature: not feeling well, headaches, etc. If chronic infections like Lyme is involved it can be a long rocky road to recovery. We believe he will 'now' live a normal life. I learned way more than I cared to about medicine. It can be a full time job but we have 3 sick children.

 

Things that help us get to where we are with older DS

  • 3 HD IVIG - Responded well but could not maintain recovery then discovered chronic infections
  • Steroids - Helped but since he is dealing chronic infections we have not used them since initial onset
  • Testing extensively for chronic infections/viruses
  • Combinations antibiotics
  • Understanding his methylation issues, detoxing abilities
  • Yearly comprehensive stool analysis
  • Yearly vitamin/mineral/amino acid testing (now testing every 6 months)
  • Addressing gut issues as best we can while on antibiotics
  • IV vitamin/minerals
  • Ozone Therapy - We feel this has really gotten at the biofilm issue
  • Healing time

I am sure I left a few things off the list. One thing we did not do was remove his tonsils.

Edited by sf_mom

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Our DS was in such a deep, dark hole once we found PANDAS and PANDAS treatment, the recovery at first looked like a bottle-rocket . . . we saw such dramatic improvements, so quickly. We were amazed . . . but also misled. :unsure: After that, it's been more or less like a diet . . . at first, the weight seems to come off pretty quickly, but those last 10 pounds?!?! Ay, yi, yi! Slower than molasses moving uphill in winter! <_<

 

We went from 100% nonfunctional to functional (in school every day, participating again in social activities, doing well academically, sleeping well, etc.) within about 9 months; the dramatic improvements plateaued after about 2 weeks, and after that it was pretty much saw-toothed recovery and plateaus during which we thought maybe it'd gotten as good as it was ever going to get. But by journaling consistently, we were able to see that though his gains were far more nuanced as time went on, they were nonetheless coming, and consistently sticking.

 

Time has been an important component in the process, in the end.

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I just logged on after months of being away to post our upcoming Salem Support Group, saw this post and thought I'd take this opportunity to respond to your question and update people on where we are. I don't recognized some of the new names and I'm sure you all may not recognize mine!

 

Anyway, like LLM's, our recovery was saw tooth. Thanks to LLM and others on this forum, I think ours was quicker than hers (3 years). We started out with the OCD that became apparent over the course of a few months (not overnight) and eventually debilitating. It took us about 6 months after visiting the pediatrician (who wanted to put my 7year old on Celexa) and a negative throat culture, to head down the PANDAS path. What convinced us to go that route was her eventual Cunningham study results of 189 Cam Kinase and positive strep titers. We saw Dr. B and after six months of Zithromax, we had our daughter back to about 90% of baseline. She then took a nosedive back down. Six months of experimenting with different antibiotics and steroids under Dr. B's care we eventually discovered Bartonella (a tick born illness). Dr. B. referred us to Dr. J. We eventually discovered Lyme as well. Treatment for Lyme and Baronella lasted another two years. Like LLM said, it was 2 steps forward, one step back. Herxes were intense at first. They were also cyclical (i.e. one time the OCD would get really intense, the next time the depression, etc.) But each time, she would come out stronger than before the herx. Eventually the herxes were just annoying and pretty brief. We finally felt she had been well long enough last March to taker her off antibiotics. She's continued to do well, even though we know the Lyme is still there (based on a Lyme culture test we did after she was off antibiotics for 3 months). The only lingering issue is some reading comprehension. But who knows, that may have been there anyway.

 

In some ways it's hard to say whether she is a baseline or not. She's almost 12 now, starting puberty. This all started when she was 7. What is recovery? What should baseline look like? All I know is I have a happy, active daughter with no signs of the OCD, ADHD, depression or rages that appeared when she was 7. I'll take it! (Even though I was extremely frustrated this weekend with the amount of screen time she keeps sneaking and the messes she and her friend keep leaving all over the house!).

 

BTW, we also figured out her older brother and I both had Lyme as well. My son just stopped his antibiotics last week. I stopped about 6 months ago. We're both doing ok. (unless, of course we count my irritiablity this weekend :P ).

 

Anyway, even though I am not on the forum that much anymore, I am always more than willing to email/talk with anyone that has questions about our experiences, what helped, etc.

 

Kara

Edited by karam

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Its taken 4 years to get where we are today. My son was 5 when this started and just turned 10. Our path has been very similar to SF Mom's. Our list looks very similar. I don't think my son is 100% but I'm not at all certain. He's certainly 90-95% back but we aren't really sure exactly since he was so young and its been so long. He takes a lot of pills each day to maintain. We always try and keep in mind he's only one infection away from falling off the cliff again. No way do I think we are out of it. Not for a long time yet.

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I am always afraid to say when my son is doing well, because as sure as I do then we see a backslide once again. I know everyone's story is different, but I have been going through this almost two years now. I have read and researched so much that at times my brain has felt fried! Anyway, the stories that always fascinate me are the lightbulb stories of recovery. I know it is not typical, but there have been parents who say their children just wake up one day and all their symptoms are completely gone. Just like those of us that had an overnight onset, others have an overnight recovery. I cannot lie, I would just love to one day wake up and have it all be over.

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Like Missmom I get a little nervous saying my son(13) is doing well(Pans began at age 8), because yes I fear another backslide. He was on Azithromycin for a year helped a lot but then had gut issues. Still feel like some gut issues are hanging around (off abx since May). His allergies are improving with weekly shots prescribed by Dr B. his sinus issues are better and we believe that's where most of this began. So we're hopeful. Lyme is always in the back of my mind but I can't bring myself to take that route for him just yet. I've been told that if he had lyme he would not have gotten better on Azith. We've had minor flares off abx but managing. The fear of a major flare remains.

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Thanks for coming back to share your great news and support! Its important for us to realize that there are recoveries, and most of those that have children that are now well are not still posting on the forum, because happily they are doing other things! So its great to hear your story and that your daughter is doing so well.

 

I hope to join you on the other side soon!!

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I've been told that if he had lyme he would not have gotten better on Azith. We've had minor flares off abx but managing..

I understand not wanting to head down the lyme road. It's daunting to say the least. But I just feel the need to share my daughter's experience in response to the above quote. Where did you hear that? When my dd first went on zithromax for pandas/strep she improved relatively quickly and was at at least 90% after 6 months on zithromax alone.

 

She had a standard lyme test after being on zithromax for a few months. One specific band showed up, but it was interpreted as negative. After she took the nose dive after six months on zithromax, we played around for a few more months with different meds. When we eventually discovered Bartonella dr. B put her back on zithromax and added bactrim saying it would treat the Bartonella and lyme if she had it. We saw improvement within days. That was the beginning of the road back to recovery. Later, when we added a cyst buster to the antibiotic regimen, more lyme bands appeared and she got a positive result. We have since even got a positive lyme culture. So, while I understand not wanting to go down that road...if that is the underlying problem you may not see recovery until it is treated correctly with the right combination of antibiotics.

 

just something to think about...

 

kara

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Wow. What an inspiring, emotional thread! It is so wonderful to hear the stories about recovery. Once again, I am awestruck by the likeness of all of our stories. I know that I should get used to it, I feel like a veteran, but Pandas still has the capacity to make me want to pinch myself and see if I will awaken! The common thought about not wanting to report "recovery" I totally get. Pandas has made me superstiscious.....Ha

 

Thank you all for sharing your stories.....all reading will sleep a little more peaceful tonight.

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