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Another parent update


LNN

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Ive seen a few "where are we now" updates and felt I should also chime in after a few months absence. My son contracted PANDAS two+ years ago at the age of 6. He had two very clear cases of strep with two very classic PANDAS episodes. After 10 months, we found a PANDAS doctor (CAM K 183), did a month of prednisone, had a T&A, then did plasmapheresis, which successfully got rid of tics.

 

 

Unfortunately, we did not enjoy a long remission. Staying on 800mg/day augmentin did prevent my son from getting strep himself, but he seemed to be a canary in the coal mine and slipped into an episode whenever he was exposed to strep. We did a second month-long treatment of prednisone with wonderful results this past January. But the rest of this year, we couldn’t seem to get more than a two month reprieve without something flaring. Brain fog and muscle pain were the major complaints.

 

 

In March, we did a standard lyme western blot which was completely negative. But something still seemed to be “not right”. So we did IVIG in June. Day 2 of IVIG was terrible. My son developed a fever (something we'd dealt with periodically over the 2 yrs). My son said it was one of the worst days of his life. The summer was horrible. At first, we expected it. But after 8 weeks, my son wasn’t getting any better. Muscle pain had gone away for the first 4 weeks but then returned. His C3D levels were still 53 (6+ times above normal and the same as they were pre-IVIG). The brain fog had gotten so bad that he couldn’t tell me what 7-0 was. I gave him some motrin and an hour later, he did math like a hot knife thru butter. Something was not right with this picture.

 

 

Our doctors agreed. They felt that something seemed to be keeping my son sick. We did Igenex testing which came back indeterminate. But what struck me was that band 41, which had been completely absent on our standard western blot in March, was now double positive. Other lyme bands (31, 34, 39) were indeterminate in both IgM and IgG. We started seeing an LLMD and DS has made significant improvements. As other lyme parents report, not every week is better than the last, but there's a trend upward that seems to be sustainable (so far). Most significantly, academics are improving and brain fog is lifting. No OCD, no tics, no rages (attention issues and muscle pain come and go).

 

Some friends have asked me "so does this mean he never had PANDAS?" We know he had a tick bite 6 months before PANDAS and had some PANDAS-like behavior a month later. But it was nothing like the full-blown, Linda Blair episodes he had after his 2 streps in the fall of that year. So my personal thinking is that he may or may not have had lyme first. Maybe his immune system was already struggling when he got strep. Maybe that was the straw that broke the camel's back and triggered the whole autoimmune train wreck. Or maybe he got lyme sometime during the past 2 yrs (we live in CT in the woods - where 90% of tics carry lyme). We'll never know.

 

I've spent a lot of time wondering if testing for lyme before pex and IVIG would've saved us a lot of time and money. But we had a standard western blot this past spring that was completely negative - not even a 41 band. So I don't think we would've discovered lyme without doing other things first. The tics were so bad and so traumatic that I think pex allowed us to put the worst things behind us. I think IVIG may have made his immune system strong enough, or temporarily reduced his C3D complexes enough to make lyme antibodies detectable by the Igenex testing. It could be that I need to believe these things to justify all the money we've invested. I don't think I'll ever know "what if".

 

But the reason for my post is mostly to encourage the parents whose kids are "non-responders" to one treatment or another. Our case was like peeling an onion, and I'm not sure we're at the bottom of everything yet. But if you only get partial response, then keep digging. Do I think my son had PANDAS? Yes. His body's response to strep was clearly severe. But there were symptoms that weren't "classic" that I lumped into the PANDAS bucket. Things like the unexplained fevers, the muscle pain, the brain fog that seemed more severe than what other parents described - a fog that was more like Alzheimer's than a head cold. With a lyme protocol, these things are resolving.

 

I suspect my son's immune system is still going to be triggered by strep, tho I hope that by treating the lyme (LLMD thinks it may be 18-24 months) maybe we'll keep his system healthy and calm long enough to let the system dial down. I have no reason to believe that the potential for a PANDAS episode will be gone, only that the thing that's been keeping him sick may be finally eliminated and he'll have a better chance at long remissions. I don't know if I believe PANDAS can be cured anymore. I used to. But I don't let myself think that far ahead. For now, I'm just enjoying the improvements and trying to cherish every small accomplishment.

 

So for those of you who are still fighting to get remission, keep digging. Keep believing. It's just that your answers may be a little more complicated than the average bear's.

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Thank you so much for your story. We are 8 mos. into not much resolution at all but resently went to a LLMD and are starting treatment. We are not sure what is going on yet but hope to discover something in the near future. We have not done IVIG yet, but will if there is no resolution/solution with the LLMD.

 

Best wishes in continued recovery!

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Been thinking about you, LLM, and hoping that things have been going better for your ds and family. You've given so much to the PANDAS/PITAND community with your posts, your articles, your presentations at conferences. If anybody deserves a break, it's you!!!

 

Relieved to hear that the LLMD is on the job and that you're seeing positive results. Finding the right doc is so critical, eh?

 

Thanks for updating us. Your online family worries about you, and it's wonderful to hear encouraging news!

 

Take care, and carve out some well-deserved "you time." We'll leave the light on for ya! ;)

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I want to ditto what worried Dad said. I have been wondering how things were going for you. Glad to hear the lyme treatments are helping. Someday we will understand how lyme and PANDAS intertwine. Until then, we look toward parents like you to post your experiences and help us all move forward one step at a time. Thank you!

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I am extremely happy for your family and I look forward to hearing of your son's full recovery.

 

Our experience isn't too different with the more aggressive treatments (3 hdIVIGs) and were even trending towards 100% with PANDAS protocol. I also have no idea if we could have sustained our improvements had we not unraveled Congenital Lyme Disease for all our children. I am very grateful that we are were are.... and still making progress. Our remaining issues for our older son is currently mood liability, learning/memory issues (ongoing) and periodic physical complaints that are consisted with a herxing cycle. He no longer seems to be responsive to strep as he's been exposed to confirmed cases in his class at school. Our LLMD also stated on average a child takes approximately two years to recover and is attributing some of his prior treatments towards timeline.

 

As a side note: They do suspect co-infections for two of our children and have confirmed Babesia and Bartonella in the other. I am wondering have they unraveled or tested for co-infections yet?

 

-Wendy

Edited by SF Mom
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So glad to hear your update; your post before this one felt so humbling. I hope this isn't offensive, but it appears the term "classic PANDAS" is quickly becoming an oxymoron. Here's hoping the new name...whatever it will be...will somehow encompass all these poor kiddos.

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Thank you so much for your update. I have noticed that you had not been on the forum lately and was hoping that things were going well for your son.

 

Slowly attacking each infection has done wonders for our children. I do think that finding the coinfections is a critical key to complete healing and I want to say that both of my children respond less and less with "PANDAS" symptoms to illness. We are 8 months into lyme (plus coinfections) treatment and while I still see a PANDAS moment here and there, they are fewer and less intense.

 

And, yes, the what came first constant monologue in your head will drive you crazy. I am still analyzing this even though I will never know the answer!

 

I am so happy you are seeing an upward trend!!!!!

 

Elizabeth

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Thanks WD and Kimballot. I realize I dropped off the face of the earth. In the month-long wait for our LLMD appt., I sank into a pretty serious depression. Some friends were pretty worried. I stopped coming to the forum because it's hard to offer support when you're not in such great shape yourself. The fear of going from one lunatic-fringe disease to yet another was overwhelming. And what if a lyme protocol didn't work? Then what? The past few weeks also brought some other hardships that took a lot of emotional energy. I guess my being able to post again is a sign of picking myself up by the boot straps (let's hope).

 

Wendy, we have tested for bartonella which came back negative. But the LLMD still suspects it due to all the neuro symptoms. The absence of proof isn't proof of absence. However, I'm not sure he's seeing Bartonella or "simply" a Pitands reaction to an infection (in this case lyme bacteria). I don't think many LLMDs would recognize Pandas any more than the Pandas docs can recognize lyme. They're so close and even a Cunningham test can't tell you which you might have. So for now, I'm just happy to focus on things that are working and leave labels for a time (God forbid) that we need to explore something else.

 

Jill, no offense taken. I only used the term "classic" as a shorthand way of saying OCD, tics, rages, urinary urges, lability, anxiety, dysgraphia.... My post was long enough. So resorted to "classic" as a summary. And yes, humbled is a good way to describe how I was feeling. After trying to digest Cunningham's "The Pathogenesis of Streptococcus", trying to learn neurology and immunology that was way over my head, being so "vocal" about Pandas and trying all the big gun treatments, to still be at a dead end was devastating. It's good to be through that tunnel and seeing a little light again.

 

Thanks for all your support - and for leaving the light on - it means a lot. ;)

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Funny... Our LLMD advised on the front end when we had no concrete results to be careful of getting wrapped up in the diagnoses. More importantly he thought he could help and did with all of our children. I won't deny it helped 'me' to eventually have some confirmatory test results to know we were on the right track. The good news Bartonella is fairly easy to treat if its there. My friend's son went from positive to negative in 16 weeks. We just started treating a week ago for our younger son so we'll see.

 

Glad to have you back. In your absence I used your link's for interpreting WB over and over.. so, thanks. AND, I too share the fear of 'what have we missed'...... After they told me my 3 year old son was tri-infected, I was beyond even being able to react.

 

-Wendy

Edited by SF Mom
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Hey LLM--Good to see you here. Hugs are sent your way and I agree with the above statements by WD, you have given so much to the "cause" and certainly helped me along the way-- Glad there is a turning in your dear s's symptoms!

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LLM --

 

Glad to see you're still around and that you're finding some effective treatment again at last. Having a sick child is demoralizing for anyone, no labels required! If you're like many of us, I'm betting you've stretched your bootstraps up over your ears by now! ;)

 

All the best as you move forward!

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