peglem

I just want to say, because it took me so long to figure out and has caused so much frustration medically, that autism is not a diagnosis in the normal sense of the word. It is just a collection of neurological symptoms. When my daughter got the autism label at age 3, doctors accepted that as the end all, like it was some kind of solution that explained everything. Nobody would investigate why she was having these neurological symptoms. Its the biggest regret I have- that because they treated it like it was the disorder, instead of symptoms that there was something wrong, we lost a lot of years, very important years before getting treatment. My advice is, if you rule out PANDAS, keep looking for that underlying cause that is producing those symptoms that are labeled as autism.

Yes, my daughter has severe autism (now 15 years old). We discovered PANDAS @ age 12, and her doctor (and I) believe the autism was caused by PANDAS symptoms interfering with development. The study of PANDAS was just beginning when my girl was 2 yo. Catching it early is a real blessing!

So, that few years when MJ kept grabbing his crotch- that was a tic, right?

Just to clarify, in my daughter's case, she did worsen w/ 2 low dose IVIGs, 3 weeks apart. She has continued with 1.5g/kg every 4 weeks, and has had 5 of them so far. She is doing okay, but every couple of months gets a course of rifampin/augmentin when progress begins stagnating. She is pretty atypical for everything (PANDAS, life in general) so we're just staying the course with whatever seems to help.

I'm not afraid of long term abx, per se. My daughter has been on abx for several years now. It's the reaction she has while on rifampin/augmentin- she feels lousy (for the whole 2 weeks) and PANDAS rages resurface big time. This may be because she gets super yeasty w/ the augmentin- even with diflucan and probiotics. I'm willing to put her through it for a few weeks because what we see afterwards is pretty good...but months and months of that...I just don't have the courage and fortitude to do that, especially since we really have no way of knowing if she really does have Lyme or coinfections. Her development has been so messed up for so long, we wouldn't even know what "cured" looks like. We have seen some amazing improvements from various treatments over the last year. But, we don't know if that's as good as it gets. With her communication problems, we are basically guessing what is going on with her from her behaviors. Input from these latitudes forums helps me make better guesses, but it really is all experimental. The scariest thing for me is that she will have some real medical emergency (appendicitis, cancer, etc) and we'll never know until its too late. Also have the menstrual cycle hormone fluctuations that toss another variable in there to make it difficult to know what's going on.

The only thing I know to suggest, but will take a commitment on your boyfriend's part, is Relationship Development Intervention (RDI). It helps autistic people develop social/emotional connectivity. You can find more info at RDIconnect.com

I'm one who took my daughter to the doc for everything...I thought it was good to at least get documentation of symptoms in her medical record. But, now that we are firmly in treatment mode, I take her in less. On the other hand, she's sick less anyway! I know you don't want to miss the 1st day of school...but how good will it be if he's not feeling well? My daughter got strep on prophylactic penVK. The trouble is, the abx can cause false negs. If the anxiety/irritability are what you usually see w/ a PANDAS flare- I'd trust that more than the swab.

My daughter did not have CamK tested before T&A (it wasn't even available in 2006), but 2009, 3 years after T&A, her camK was 242. I suppose it could have been higher before, but not much!

Yes, severe autism here, with the caveat that I believe autism is symptoms, not the actual problem. And don't worry, even if you did tell me its for sure lyme disease, there is no way I would ever go with a dx from somebody who has never even met my child. I just wanted to see if my suspicions @ her abx experience were worthy of more exploration. The low dose IVIGs in March and April made things worse. But the higher dose ones in May, June, July and August have not caused herxing or worsening of symptoms. It wouldn't take four months for the herx to show up, right? I don't think the current backslide is a herx to anything. The possible culprits are: 1) premenstrual discomfort- that time of the month should be here any day now. 2) The second 2 weeks after IVIG means her IgGs are lower and that coincides with school starting up again (exposures) 3) Something is rearing its ugly head again. I'm thinking I'll give it a week for to see if its 1 or 2. If it starts getting worse or I see no improvement, its not a problem to get her pediatrician to rx rifampin again. I'd like to avoid the rifampin if I can- my daughter has been through enough ###### in her life- we'll go through that if necessary, to get the following months of recovery, but only if we have to. And no way, NO WAY will we do that for a couple of months! I really have no symptoms of anything! So unless it has been completely dormant in me all these years.... Thanks for your responses...givesme some stuff to think about.

I know Lyme is the great mimicker. But are there any symptoms that might be hallmarks that set it apart from, say, PANDAS? It just seems like testing is so iffy, and anyway, my daughter is getting monthly IVIG and is on zithro, so testing would be even iffier. Here's why I'm curious: My daughter had a PANDAS exacerbation last October, and was a strep carrier. At the end of November her pediatrician put her on a rifampin/augmentin combo for 2 weeks, then increased her zithro dosing. We had 3 months of some pretty sweet times (its all relative, but we had not seen things this good in years). In March and April, we did some low dose IVIGs and things went downhill again. Then in May, after her 1st high dose IVIG, we did another course of rifampin/augmentin (like a week after)and things got pretty sweet again, although during the treatment it was still pretty bad. We have continued 1.5g/kg IVIG every 4 weeks since May. She had her last one yesterday, but the past few weeks she's been slipping back. While its not nearly as bad as what it was last fall, I'm thinking we're headed for another course of rifampin if things do not pop back to the good soon. We were so focused on the chronic strep before treatment, we didn't really look for more than that going on, but the herx reaction to the rifampin and the fact that the PANDAS treatment doesn't hold her steady makes me a bit suspicious that there's more going on here than just PANDAS.

Well, I'll offer up my daughter as the poster child for how F'd up this disorder can make you after years of no treatment. She was afflicted in infancy, no real, effective treatment until age 15. So all her formative, developmental periods were affected. She had periods of time where she did learn well, but future exacerbations wiped out a great deal of what she learned. Right now she is very dysfunctional- cannot speak (but that seems to be mostly motor coordination), fine motor is very poor, huge anxiety issues. The greatest improvement we've seen w/ treatment is in the area that was the biggest problem- those fight or flight reactions from out of nowhere that looked for all the world like demon possession. Those have been going on since she was 18 months old. In exacerbation she would spend 5-10 hours/day in this state- psych meds offered little relief. Since starting PANDAS treatment, we've had periods of months w/ no F or F attacks, and we begin to see early childhood development during these periods. I've discovered there is a reason God made toddlers small! Now, I just don't know if there is permanent brain damage or not. Normal development did not occur, but we see signs that it can still happen! Realistically, I know we are not going to end up with a "normal" adult. But, I plan to treat her as though she can fully recover because we just do not know how far she can go with recovery. We are working with an RDI (Relationship Development Intervention) consultant, because the RDI program focuses on brain development in a sequential, natural way. We may be looking at retrying some of the psych meds down the road- we could see some benefits now that there is less chaos in her brain. Such a strange journey we are traveling- no map, just a general direction. Gosh, kinda lost my point in all that- but, I guess my opinion is that the human body/brain is an amazing entity with a great capacity for healing and repairing itself.

I don't know why, but I've found that DOs (doctors of osteopathy) tend to be better listeners, more open to learning and better problem solvers than most MDs, so your chances of finding a good doc may be better if you start with DOs.

Sure wish I could shoulder some of that stress and anger for you. I'm outraged that you and your family are being treated this way. Hope justice prevails and your son gets everything he needs to recover!

What a sweet story! Its times like these that really show you how far your kids have come! Congrats! And I hope they stay sweet and loving school all year!

Not a stupid question- there is a lot of confusion about strep titers. But, the answer is no, w/o clinical symptoms-no PANDAS. These titers are just an indication that the immune system has responded to strep exotoxins. However, the OCD/hoarding and ADHD are(or at least can be) clinical symptoms of PANDAS. I've never tried the biofilm protocol, but am leary of chelating agents.

She needs to start by seeing that these things are getting in the way of her doing what she wants/needs to do and then to see that she can overcome it. Be careful with "tricking" her- you'll need a strong relationship of trust to help her work through. It takes an incredible amount of courage for kids to face these fears and overcome them and many times, even when the anxiety ebbs w/ recovery, the fear of fear makes it difficult to function. I mean even when there is no longer anxiety attached- to say, touching handles, the fear that the anxiety will come back (because it came out of nowhere and was uncontrollable) if they touch a handle may still be there.

Melatonin has been known to cause nightmares, but its worth a try if sleep is an issue. My 15yo daughter gets 3mg/night, about 1/2 hour b4 bedtime. Also give her 900-1350mg of valerian root. It almost always works. What I usually do is give 1.5mg melatonan and 900mg valerian root 1/2 hour before bedtime. If she's not falling asleep 1/2 hour later, I give another 1.5 melatonin and another 450 valerian. She's had extreme sleep problems since infancy and this is the only thing I've found to work pretty consistently. When I only give melatonin she will wake up almost exactly 4 hours after dosing.

What type of antibiotic seems to work best in this instance? We used rifampin/augmentin successfully.

We usually do checks every 6 months, unless we do a round of rifampin, then we check just before and 1/2 way through the course of rifampin (usually do a 10-14 day course). We,ve never had abnormal results.

As long as you're getting blood drawn, why not also get an immune panel: total IgG and the 4 subclasses, IgM, IgA, IgE? My kid is a low titers PANDAS also, and she has imune deficiencies as well. Also, (in the interest of poking your child as few times as possible) ask for the IgG and IgM for mycoplasma pneumonia (which I think can also be a lyme coinfection). If you have to drive 3 hours to see this immunologist, I'd sure want to have as much info as possible to make the most of the visit.

My kid is hard to swab too. We've had TONS of positive rapids, and no culture was done on those. Cultures sent out on neg. rapid have always come back negative. But, they always use 2 swabs at the same time, in case they need to send out for culture because it is so difficult to swab her. So I never know if the neg. result is from por swabbing or truly neg. My daughter has been considered a carrier....

Not an expert here, but have heard that sometimes people get asceptic meningitis post IVIG- especially if they did not have sufficient hydration. I'd get it checked out asap- maybe its not serious, but I'd rather err on the side of caution (said the mother who didn't take one of her kids to the doctor to get her arm checked for 3 days after injury- only to find out it was broken!).

Three years ago we saw a rheumatologist, and while he didn't say he didn't believe in PANDAS, he said my daughter didn't have it because its very rare and her ASO titers were not elevated. There has been a lot of new research since then and we saw him again last November, with our Cunningham results and the newer studies. He was more receptive this time. After calling Dr.s Cunningham and Latimer, he decided that treatment was experimental at this point (other than abx, which he was willing to prescribe 3 years ago) and referred us to Dr. Latimer. I think at this point, while there is lots and lots of anecdotal evidence about treatment, there are very few studies about actual treatment efficacy. Many doctors are uncomfortable with that and stick with standard (often ineffective) treatment for OCD and tourettes.

I just looked it up and both Flonase and Nasonex are steroid, so don't know what the difference is. But, I stopped Allie's Nasonex and no more nose bleeds. I'm sticking with Xclear and saline!

I was told when I was looking at going to Dr. Latimer, that we would be covered for any in network doctor, regardless of state. But, you can always call to make sure!