new and hanging on by a thread

[otksmama]

We had our appt w dr k. He said pandas but wants to confirm it with 14 days augmentin (good thing we are already on day 11) then 5 days of prednisone...and observing him for 14 days after that. He said ivig is a cure (as is plasmapheresis) for 80%. The he said he'd place him on abx for 1-2 years. Deedee...how has your daughter done with two rounds and l-t abx? Do you know how others have fared with that protocol?

I asked about my sons trigger and he said because it is an autoimmune disease, it is likely more than one infectious agent causing these episodes. He wasnt concerned with treating an underlying infection. But this seems to be in contrast w some of your experiences here. Or am I misunderstanding?

He said ivig works by allowing his bone marrow to stop producing antibodies temporarily, then as its effects wear off, his system "reboots" and essentially starts over...without producing the haywire antibodies. I asked for literature, but he said there's not much aside from studies done in the 90s and 2000. Of course there's the current nimh study. I'm trying to get a copy of the grant.

I'm having a very difficult time w his anger. Everything sets him off and it's so intense. He lashes out at anyone, and I'm scared he might hurt my 9 mo old son. Our disciplining efforts don't seem to work, distraction doesn't work. He is just so angry/frustrated/irritable most of the day. Is this common? Any chance something in addition to pandas is going on...like parasitic infection? Certain values from his bloodwork are indicative of that, but they also show allergic rxn too, which he has. He is always asking for food, always. he is average for his weight though. hes always itching his rear, but i dont know if its just an ocd thing. Have any of you had experience with testing for and treating parasites?

[LNN]

Dr K's explanation of why IVIG works is only his theory. There is no research to explain why it helps - not just for Pandas but for other autoimmune conditions. He may be right - he's not the only Pandas doc to use the "re-boot" theory. But as I understand it, the current NIMH study was designed only to evaluate efficacy (and maybe help get insurance coverage), not to explore how/why it works.

 

I do hope the prednisone burst helps your son and that perhaps IVIG is something that could put him in that category of patients who get well enough to not return. But using the term "cure" is a personal pet peeve of mine. My first Pandas doc used it just before my son had plasmaphersis and I was crushed when it didn't "cure" him. I personally don't talk in terms of cure but rather long remissions. But that comes from my bias - I belong to a forum where kids are sicker longer and struggle with less than vanilla cases of Pandas. So my experiences reinforce my ideas that Pans/Pandas isn't cured but rather you can do things to reduce your risk of recurrances. Dr K on the other hand, has a bias on the other end of the spectrum. A large number of his patients probably do get well enough to never return, may not need more than one IVIG. But others may not return because they needed a different protocol than Dr K uses. He doesn't investigate chronic infections. If you don't have one, then this isn't a big deal. But if you do have one, and he doesn't test for it, then you may not see progress and you instead turn to a different doctor. But as far as he can see, he treats them, they don't come back, so his protocol must have cured them. So each of us has a bias based on what we see every day. The truth about a "cure" and success rates and the role of chronic infections probably lies somewhere along a spectrum. And in the end, the only truth that matters is what ends up being true for your son.

 

As for anger, my son had a lot of that. Motrin helped and I eventually found that some of his methylation issues made him what's called an overmethylator. So taking a B complex vitamin higher in niacinamide has helped as well. We also did a lot of cognitive behavior therapy (CBT) and that gave us both a life-long tool to help us communicate and regulate.

[otksmama]

LLM...what is the prednisone burst all about? All I know is that for pandas kids it will reduce or eliminate symptoms, correct? If there are no changs or minor reduction in symptoms, does that mean no pandas? And do you know why 14 days post burst? Does it take that long for changes to be seen? And do they return eventually or is it enough to put a child into remission?

[LNN]

Prednisone is an anti-inflammatory and the current thinking is that if prednisone helps to reduce OCD/Pans symptoms, then that provides clinical evidence that those symptoms are inflammation-induced (and potentially auto-immune in nature) rather than "garden variety" OCD, which should not wane with prednisone. It's a piece of evidence that clinicians can use to affrim their treatment/diagnosis. But it doesn't mean you don't have Pans if you don't respond well to prednisone. As they say in lymeland, absence of proof is not proof of absence. There are reasons prednisone may not help - such as if you have an on-going infection. If you use prednisone for poison ivy but continue to romp thru poison ivy every day while you're on the prednisone, it probably wouldn't help the inflammation the way it would if you didn't have on-going exposure to the thing causing the inflammation.

 

There seem to be two approaches to using prednisone for Pans. Dr K seems to favor a short burst. When you take prednisone for 10 days or less, you can just stop at the end. If you see improvement in symptoms, it's enough evidence for him to suggest he's on the right track and he seems to then either recommend continued use of abx and/or IVIG. (at least from what I can tell from people here - I've met him but never used him as our dr).

 

The second approach (used by Dr B, Dr L and I think Dr T) uses prednisone for 3-4 weeks. The goal here is to end the inflammation and hopefully help the symptoms resolve - at least until another trigger/episode. When you use prednisone for this length of time, your body starts to make less of its own. So when you stop taking it, you can't stop cold turkey. You need to taper down the dose so your body gets the signal to resume making enough of its own. This taper approach can be a miracle. If you give a regular kid prednisone for 3 weeks, he'd likely be off the walls with hyperness and anger/edginess. But for Pans kids, it calms them down and brings them back to an awesome place. But...this is assuming the infection that triggered the episode is gone. A few kids here have taken prednisone but still had some sort of infection and in those cases, prednisone didn't help, or only helped for a short time, and in at least one case i can remember from a few years ago, it made the child worse. So if you don't like what you see in terms of response, listen to what your gut tells you. But it doesn't mean your child doesn't have Pans (he may or may not). It means there's more detective work to do.

 

As for the 14 day post-burst asessment, I think that's a dr K thing. Mabe some of his pateints can chime in on his thinking.

 

When my son was a toddler (pre-Pans), he was supposed to take 5 days of prednisone for croup and it made him bounce off the walls with hyperness. I stopped it after 3 days because he was so unmanageable. When he developed Pandas, it was a totally opposite reaction. I saw improvement after the first day - like a huge sigh of relief from his brain. He was amazingly calm and mentally sharp. But we were only able to sustain remission for 2 months (and this ended up being a clue he had chronic lyme). Other parents haven't seen improvements as quickly but did see improvements toward the end of the taper or afterward. Everyone is different.

[mdmom]

I would like to add that some children with PANDAS/PANS also have immune deficiencies and therefore, they do not produce enough antibodies to properly fight infection. My DS16 also has a primary immune deficiency. In our search to find help for my son (who was 13 and a chronic case by then), we ended up at a Lyme-literate-medical-doctor (LLMD) who clinically diagnosed my son with multiple infections (some tick-borne). He was negative on all the infection panels except for strep and mycoplasma. But I trusted our doc and she aggressively treated him for Lyme, Babesia, Bartonella, Mycoplasma, Strep, Candida, viruses. Finally, after 2 years of aggressive treatment with antibiotics, antifungals, antivirals, my son started receiving monthly high-dose IVIG (HD-IVIG). After 4 treatments, the doctor tested for infections again (he had been tested multiple times and always came up mostly negative), and he tested positive for all of the above infections. We had waited a sufficient amount of time between IVIG treatments so that the donor IG did not skew his test results. The IVIG helped his immune system actively fight infection. Antibiotics only do part of the work in fighting infection; one's immune system is supposed to do the rest of the work.

 

Whether you are dealing with Lyme and co-infections or not. LLMDs are very good at diagnosing and treating weird infections that may not be showing up on blood work.

 

I've been around this forum quite awhile. My son is a chronic case, so don't be discouraged by those of us that have been treating for years. He was symptomatic during his toddler years and wasn't diagnosed until age 13. The fact that you are seeking help so early in the game for your son is wonderful.

 

One thing that many agree on is that you must address underlying infections if you want to see lasting, healing results. IVIG is not a quick-fix for all - and it's costly, especially considering that most insurance carriers will not pay for IVIG for a PANDAS/PANS diagnosis.

 

My advice: slow and steady wins the race. Like others who have posted on this topic, we have addressed many, many layers of issues including the following:

diet - we are 100% gluten/dairy free and as much organic as possible, low sugar diet

gut health - we use high doses of probiotics (it's estimated that 70%+ of your immune system is in the gut)

methylation

inflammation - we use circumin (and ibuprofen when there's a flare)

hydration - drink lots of good-quality water

hidden infections in sinuses - we use antifungal and antibiotic nasal sprays

infections - long-term antibiotics

yeast - antifungals to keep yeast at bay

immune support - low-dose naltrexone

chiropractic adjustments

 

Best of luck to you. This forum will be a source of comfort and good information.