Need help hoping

[KLW]

Hi, I've only posted a couple of times as I'm new here and only recently DS dx with PANDAS by Dr. Latimer. He is 12.5 years old and while the dx has only come very recently he has been sick basically his whole life. I know no one here has a crystal ball and everyone is different, but is there anyone here with a successful story of a child who had to live with PANDAS for as many years as my DS and was able to be healed at least to the point where it was manageable?

 

He probably had first autoimmune reaction as an infant and there was no way to see that "dramatic change" in personality. I've been chasing a correct dx his whole life, seeing doctors all over the country, most of whom threw up their hands and said they didn't know what was wrong and sent me on my way. Five years of Yasko protocol probably helped keep him from being even sicker than he is now. Something I learned he needed when he was 3.5 years old probably helped preserve his brain from debilitating brain inflammation (it's a long story) and therefore preserves my hope that he will fully remit despite years of undiagnosed PANDAS (I don't say "untreated PANDAS" because he has been treated in many helpful ways over the years). He is one of the immune deficient kids as well (significantly low total IgG and subclasses IgG 1 and 3).

 

Although his is a severe case (according to how severity is described in the overview section in pandasppn.org), it isn't extreme (no anorexia, self-injurious or other dangerous behaviors), but the anxiety and impulsiveness is severe, attention span is non-existent, tics and OCD is moderate, and his major motor issue is severe apraxia (he is basically completely non-verbal but communicates in other ways very well).

 

He was on amoxicillin then omnicef for the past 2.5 years after I determined Yasko was not going to move us forward any longer. Once on the antibiotics he couldn't be off without very troublesome behaviors. Did a 21 day round of xifaxan in Aug as a very well-educated guess suspected small intestine bacterial overgrowth as infection source. It worked well and for the past 64 days he was off all oral antibiotics...until yesterday as I had begun to see a backslide in behaviors and a bout of severe folliculitis was no longer being controlled topically. After one dose of the omnicef everything went back to "our normal" behaviorly and the folliculitis was 90% better overnight. He responds to antibiotics and prednisone immediately. A high dose pred round in June was amazing - tics disappeared with the first dose and dysgraphia, swim stroke control and other motor function improved dramatically and immediately. We are in the midst of finding the right provider for IVIg. I'm praying, praying, praying that the immune system "reset" will be just as dramatic as his response to other treatments. His CamKII was 187, so I don't think antibiotics alone are going to do the trick and unless we weren't on the right antibiotic or right dose...2.5 years on them proves it isn't going to do the trick alone. Unfortunately we haven't ID'd a specific culprit (titers are all normal). I'm beginning to worry about bartonella, though, as he has bad stretch marks that could easily be attributed to fast growth (they are most all in areas where you would expect and stretch marks in a rapidly growing and large boy, except there are a couple of stray ones that have recently appeared in the small of his back that seem out of place. We've never tested for bartonella and I'm not confident the Lyme test was done per the one that is most reliable). Regardless, he may be so past the titer stage that we'll never know the culprit, but I do know that omnicef helps a lot and strep is often indicated with folliculitis.

 

I know that any number of days, weeks, months and years of PANDAS is more than difficult. Twelve years is a very, very long time to live with this and not know what is going on and now that I do know, it is hard to get past the thought of "are we too late?" especially when I read things like the PANS/PANDAS Fact Sheet 2015 that states "untreated PANS (PANDAS) can cause permanent debilitation and in some cases can become encephalitic in nature". I do believe that would have been the case had we not provided the intervention we have all these years, but I'm so scared we won't be able to get to 85-90% at the least, if not fully remit. My only prayer is that he has a shot of being an independent adult. He is so smart and funny and has an incredible memory and is independent in so many ways, but the anxiety and OCD holds him back from so much. I know Beth Alison Maloney cited in Saving Sammy that a child with PANS (Lyme) went undx for 10 years and healed very well. Any long-term illness success stories is appreciated. Thanks for reading this long post - I needed to unload. - K

[emst]

It's important to keep in mind hat recovery is "not just one thing" it's a bunch of little things that that are affecting your child. IVIG for example people look at it like a golden ticket but you also need to find the right diet for your child with optimal nutrients, exercise, mental exercise etc. self esteem, rest. All that. It's hard to keep all those balls in the air.

 

TACA is a great resource whether your child has autism or not there are many commonalities to treatment. https://www.tacanow.org/

 

We have 3 kids w Pandas, 1 also has Autism. All of their Pandas has improved, one is gone, 1 is in remission, one still has to deal w pandas but way, way less then before. We work hard -- but that's life for you.

 

You have a very good doctor. Do you have a support group near you?

[KLW]

No local support group. No autism diagnosis (which I believe is correct). Proper diet and supplementation is already established through years on Yasko and use of integrative doctors. I'll look at TACA, never heard of it. Thanks.

[Mom23boys]

First of all, I wouldn't worry about the statement "encephalitic" in nature. My understanding is all that means is that even if you remove the infection, at some point the immune system takes over and the brain remains inflamed. This is not permanent inflammation. Just means that there is no infection driving the bus so to speak - it has become autoimmune.

 

I am curious though why Dr. L did not recommend plasmapheresis? In severe cases, it seems to be the thing that brings you back closest to normal with one procedure.

[MomWithOCDSon]

KLW --

 

My DS, we're fairly sure, suffered with PANDAs for the better part of a decade before he fell off the edge of the world at the age of 12 and we finally got a PANDAs dx and intervention (abx). Prior to that, at age 6, he'd been given a host of other dx -- OCD, general anxiety, even PDD-NOS -- when his OCD/anxiety would ramp up suddenly and dramatically and he'd be unresponsive to therapy and the psych meds they gave him.

 

Finally, when he became completely nonfunctional at 12, we found this forum and some newer research and materials that helped us advocate for PANDAs treatment, and his turnaround began. It was slow. It was painful. It was frequently two steps forward and then one step back. But over time, he DID come back around, and he continued to make gains every day, every week, every month and every year. In the end, we had him on abx for nearly 2 years, and he continues to take supplements and a couple of prescription meds to this day.

 

He is not, as some families are able to achieve, 100% or, I would say, even 95% OCD/anxiety free. He continues to encounter it, perhaps not daily, but frequently, as he makes his way through a world fraught with novel situations, new people, pleasant and unpleasant surprises, etc. But he's had years, off and on, of therapy and coaching, so that, in conjunction with the other interventions, help him regain and maintain his balance, more often than not.

 

Today, I am happy and proud to say, he's in college. He lives on campus, in a private dorm room, and attends a full class schedule. He's made friends, keeps himself fed and dressed, does his own laundry, keeps up with his coursework and overall enjoys himself. When he has a tough day and feels stressed out, he knows what he can do to downshift: turn in early, call or text his dad or me, listen to music or play a game for a bit. He's doing a great job of growing up, in other words, even though his path has been different from the paths of many of his peers.

 

So, based on our experience, I have full faith that most kids can come out of this horrid experience resilient and strong and capable, even if changed. You'll make it through, too . . . hang in there!

[KLW]

I wonder that, too. I'm having to learn and catch up on my own in order to understand the recommendations being made by the two doctors that I'm juggling (one is the integrative doc that first suggested it may be PANDAS and then I took the step further to see Dr. L). As I read more I wonder about some of the decisions that have been made in the past year and a half, very specifically why the Atlanta doc has us doing weekly subQ Ig since Jan and then why Dr. L has allowed it to continue since May when I understand frequent low dose Ig is rather contraindicated and certainly not going to treat PANDAS with the "resetting" of the immune system. There is never enough time to discuss these decisions on phone consults - too expensive to allow conversations that may go too long. She is recommending IVIg now as his Ig levels are not increasing very quickly. Its just nauseating to know what I know now and think that we've basically wasted an entire year. I know PANDAS is complicated, but the treatment options are pretty straightforward...not sure why this has to be such a winding road.

 

He is low Ig, so plasmapheresis isn't going to remedy that. I just said the word plamapheresis to our ped and he did a "whooooaaa". If the IVIg doesn't produce the desired results, we may be headed there but like everything else, it will be an uphill battle..

[KLW]

Oh, sorry, my last response was responding to Mom23boys - the subsequent post from Nancy came while I was typing

[KLW]

Thank you Nancy - I'm trying not to let my baby boy see me cry!

 

I'm so sorry you went through it, too. I can totally relate. I'm in it for the long haul and whatever he needs he will get. I feel he was at his sickest around age 4-5, then we brought in naturopath that really, really improved his and our quality of life. At the five year mark I just felt like we had hit an insurmountable brick wall and Yasko protocol wasn't going to move us past that point. I still have a lot of the supplements and vitamins in place and they will remain there. The hard part is the constant bacterial and yeast assault that renders him unable to be without antibiotics and antifungals but we still haven't breached that wall. Perhaps this next step will get us a little closer.

[rowingmom]

All I can tell you is to not become disheartened. You sound like a good, smart mother who has already helped her child immensely.

 

Continue to try different protocols until you find something that works. Keep an open mind, and if something is not working, don't let the high profile doctors talk you into doing the same thing over and over and over again with no significant results. You will know when it is time to move on.

 

Emst is right in that everything has to be addressed. Nutrition, toxins (pesticides, metal adjuvants) and detoxification capability, infection, inflammation. Everything matters.

 

Please don't rule out possible chronic infections. Bartonella, babesia, mycoplasma and the other lyme "coinfections" can all be stand alone infections as well. Lyme does not need to be present for them to proliferate and effect immune status.