A million questions about treatment, symptoms, is there a "cure&#3

[eljomom]

I am sorry if I may be redundant here, but I am just really, really struggling here with what course to take with my daughter. My goal is to give her a good life, and to NOT make things worse. That being said, IF, IF, IF this is pandas/pitand or ANY type of infection-triggered situation (the germ ocd starting a couple years ago, the hyperactivity, the couple tics this spring, the onslaught of tics this summer, separation anx, etc....) and I can possibly arrest it rather than it turning into lifelong Tourette's, then I owe it to my dd to try something. My brother does have Tourette's, BUT also had chronic strep and ear infections as a kid. Tonsils/adenoids removed. On abx. STill has Tourette's. AT the same time, it appears that abx alone are not the cure for many of our kids.

 

I am wondering a couple things---if dd has had no change in onset of sudden many tics, does that mean that we are past the infection stage and looking at an autoimmune situation that abx are NOT going to solve? In that case, won't steroids only put a damper on things for a brief period of time??

 

Also, we have never done a viral panel or anything, nor seen LLMD yet, so aren't those important before trying steroids?

 

My dd is not "severe" as some of you have---yet. Yes, the ocd stuff is annoying, and the separation anxiety is annoying (and scary for her) but we homeschool. And her sibs sleep with her at night. She is generally happy (unless having a meltdown about someone touching her food, or crossing her in any way). But the tics. When she just had a couple, I blew it off as "just a phase." Then after the fever, when it became head to toe tics....unless she is very focused, she is pretty much stretching her mouth, sticking out her tounge with a curl, blinking hard, widening eyes, stiffening arms, flicking fingers, sometimes snapping neck back. BUT SHE NEVER COMPLAINS ABOUT THEM.

 

I go back and forth, thinking "it could be so much worse"---but then "what the heck happened to my kid?"

 

Cam K was 168, Lyme had a few ind's and +'s that I personally believe to be cross-reacting with something. Anti-neuronals had D1 high, and lyso. BUT......on one hand, you see those and some will say "it's pandas" but others say "this is just research and we don't really know what it means."

 

I have read the horror stories of kids getting WORSE on steroids, and IVIG, and the risks, and I look at my kid and think "she is pretty okay"---and then I think "something is really, really wrong" all wrapped up in one. People say "just try the steroid...if it works, it's pandas...if not, then you know it's NOT." It's the "if not" that scares me...that I will cause worse tics or rages in her. So many say that IVIG and PEX are for severe cases, which I can see, as they are both invasive and not without risks. BUT ... what if we were to do those treatments BEFORE it gets severe? Maybe avoid all of this?

 

Is there really a CURE for this? Does anyone really have a cure after steroids, abx, IVIG, PEX? Or does it just tame things down until the next exposure/infection?

 

I just don't know anymore. I want it all to go away so I don't have to decide. I went through the ringer with my first dd---major digestive issues, at Chidren's, Hopkins, many, many invasive biopsies, procedures, NG feeds. At the same time I was diagnosed with cancer. Then my second ds had to go through similar stuff for digestive issues, enlarged spleen, possible leukemia. Number 3 came along, and i got postpartum depression. Number 4---my pandas kid, was always sick, were told she might have Down's at 17 months of age (she doesn't). I've had enough. Yet I know I can't get out of this one either.

 

we have seen Dr. Latimer, and I love her, but I wonder if it would be good to get another man on board the ship.

 

Sorry to sound like a big blubbering whining complaining sob story. No pity wanted. Just needed to vent, as my husband is totally uninvolved with this....thinks it will just go away if we leave it be.

 

I have more ???'s but need to run kids here and there. Thanks for listening.....

Wendy

[lyme_mom]

Her Lyme test has a few INDs and positives? Which bands?

[dcmom]

What did Dr L say?

[TexasDad]

Wendy, I have a whole 3 months of experience with PANDAS, but I want to take a stab at this because your post left me a little unsettled. Again, I'm no expert, but some children do remit almost completely with hd abx so it seems to me that abx can help with the auto-immune response. I may be completely wrong, though. Sometimes these abx courses go on for months before real improvement occurs and sometimes the type of abx changes to zero in on what works. Most importantly, I would STRONGLY suggest you follow your instincts and stop second-guessing yourself so much. It seems you may have been down and back on every path over the years, so maybe the second-guessing is a product of that. Only you know.

 

Our experience with our son taught us something that I've never expressed in words before. I truly believe that we as parents, if we will trust it, have something inside us that tells when to fight, when to not fight, and sometimes something in between. With our son's PANDAS, we just knew it wasn't right, not in the long-term plan for his life, and we needed to fight it with everything we have. We simply were not going to take "no" for an answer. Fortunately, we received the right treatment very quickly and we're already back in school, albeit on a half-time basis at this point.

 

I'll be the first to admit that we may be a little naive, but we didn't hesitate to get IVIG for him. I'll leave it up to the doctors to know when to be concerned, when not, or about what. Whatever. I'm not even sure what all the concern is over. Ours wasn't and that course of treatment, together with steroids, has been the key to his improvement. We probably could have passed on the steroids, but it helped calm things down while the real healing from IVIG was running its course. In our case, he responded well but not without incident to both treatments and I don't think we're looking at any long-term or permanent adverse effects.

 

All I'm saying is trust your gut and decide to fight. You seem to be on the fence. If you're looking for someone to push you over, this is it.

 

I hope you can find peace and healing for everyone in your family. I firmly believe it is possible. My heart goes out to you.

[GraceUnderPressure]

eljomom, I totally understand what you are saying. I don't have the answers - I only have my own personal experience & perspective to share. My son is 18. As near as I can tell, his issues started (or at least became noticeable) around the age of 4. They gradually increased over the years. They were bizarre, sometimes annoying, but never intolerable. Then for some reason, allergy season last year hit him really hard & his tics exploded. Only the good Lord knows why. That was followed by a mycoplasma-type infection in June that sent him to a level where he was effectively disabled. We have yet to pull him back from it.

 

Over the years, we tried to eat whole foods & eliminate intolerances & take supplements, but it wasn't enough - he just kept getting incrementally worse. (It's probably because we have always homeschooled him that he did not get worse sooner since we had fewer exposures) Unfortunately, I really had little clue what we were dealing with till very recently. Autoimmunity doesn't go away by itself if you ignore it. In fact, in many of us, it tends to get worse if you do nothing.

 

There is no cure for autoimmunity - though I continue to hope & pray that one will be found soon. And it is true that some are able to get to it soon enough &/or keep it subdued long enough to effect a recovery so there is hope in that as well to make treatment worthwhile. But even without a cure, putting it as much into remission as possible could possibly be saving you & your child from what we're going thru right now.