mama2alex

We've been out of town and I just saw this a few minutes ago. I filled out the survey, but wanted to note that while I answered "no" to the fever question, my son was 5 days into confirmed pneumonia when he had his sudden onset - so he was definitely sick, it's just that he rarely gets a fever.

Vickie and Kelly, Thank you both so much for conceiving this idea and then working so incredibly hard to make it a reality! I PM'd with Vickie at one point a few weeks ago, and I know this literally became a full-time job for her. This is just HUGE for PANDAS, and I agree it will have a far-reaching ripple effect that many of us will never be fully aware of. Thanks again to both of you and to everyone who recruited friends and family to vote and stuck with it every day. I am so proud of us as a community!!

Me too! I'm so excited!! We are still holding at 6th. My son and husband keep asking me too.

This reminds me, my son was fully vaxed with DTaP and he has ZERO immunity to it. We checked titers prior to giving him his final DTaP shot, and he had zero immunity. Then we gave it to him and a year later we checked titers agin - zero immunity. I wonder how many kids get this shot and get absolutely no benefit/protection from it. This is also interesting because my son has asthma that only flairs when he's sick. It started 6 weeks after his last DTaP vaccine.

Is pertussis now in the schedule for 11 year olds?? Stephanie Cave's book, "What Your Doctor May Not Tell You About Children's Vaccinations" states that children over 7 years shouldn't be vaccinated against pertussis, but my copy is 9 years old, so I supposed the "thinking" has changed in that time. I also read that on the National Vaccine Information Center's web site (just now). I thought only babies were really at risk from pertussis?? Also, I think Pertussis is considered a particularly suspect/risky component of the DTaP, even the newer acellular type. Also, why do they need the Tetanus vaccine at age 11? Can't they just get a booster if they step on a nail at some point? I cut my arm climbing a fence in high school and I remember getting a booster at that point. I think I'd had one tetanus shot prior to that, and that was enough to prevent any problems. As for chicken pox - that's just ridiculous. I think the vaccine schedule has very little to do with what YOUR child NEEDS anymore - it's all about the almighty dollar. If you want to read up, Stephanie Cave's book is great and I believe there is an updated edition. Also try www.nvic.org - National Vaccine Information Center's website.

Just checked it and we slipped one spot! Keep up the voting!!

Thank you so much for this post. I just copied your entire post into my list of what to discuss with our doctor on Friday! My son has never shown a full, or even dramatic, improvement with antibiotics. The best we've been able to do is 75% better with IVIG, then we lost ground. So maybe this will be our answer. I'm just trying to follow up on every avenue until we get him healed.

I'm so so happy for you! Thanks for sharing this wonderful update!! I hope you have the wonderful summer you all deserve.

This is really interesting. I wonder if this is why my son has had 6 bouts with pneumonia (almost 7 this spring, but he was already on antibiotics, so we nipped it). It might also explain why he was deficient on s. pneumo titers then had a borderline response on s. pneumo titers post-Pneumovax (just high enough for the insurance companies to deny monthly IVIG, but still low on a number of them). I'm adding this to my list of things to discuss with the DAN doc this Friday! what is that/this? It would be "carrying" the streptococcus pneumonia pathogen in your cells, without exhibiting an immune reaction that would demonstrate infection- like strep A carriers, but with a different pathogen.

That's amazing and wonderful! What a gem. Have you posted his name on the "Doctors who've helped with PANDAS" thread?

Hi Mommynme, I'm sorry you are having to deal with this! Your pediatrician can't really rule out PANDAS based only on the fact that you have tics too. It's a complicated clinical diagnosis, so I'd say if you're pediatrician said this, they don't really know much about PANDAS. I'm not sure where you live, but here's a link to a list of doctor's who have helped kids with PANDAS - it's organized by state. You can also ask questions about PANDAS on the PANDAS/PITAND forum here. http://www.latitudes.org/forums/index.php?showtopic=6428 The best doctor in the country is Dr. K in Chicago (contact info is on the list) - you can set up a phone consult with him by emailing him your daughter's history.

Thanks for posting the song! It really does hit home. Whenever my ds10 hears it in the car, he immediately says "Don't change the station!" (I'm a big radio channel-surfer in the car. ) I've peaked at him in the mirror when it's on, and he really listens closely and never talks during this particular song. I think it really speaks to him, and I feel glad that there's something like that he can relate to, and hear his own feelings in. It does make me so sad though.

Bump. Keep voting everyone! We're almost to the finish line!

This is AMAZING news! I am so happy for you. I hope you continue to see more wonderful things!!

I suspect "turning back the pages" may just be a metaphor for detoxing or herxing. In other words, when all those healthy antibodies flood the child's body, there is a massive die-off of strep/mycoplasma/viruses, whatever is in there creating problems. I had this discussion recently with another mom from this forum and she had learned about this from a very knowledgeable doctor. So if you think about it that way, when you see "turning back of the pages," what you want to do is anything that will help the body get rid of the exotoxins/immune complexes, etc. That could include epsom salts baths, bentonite clay, charcoal, exercise, lots of water, etc. This might also include minimizing stress. I hope this helps. You are in my prayers. I remember what a rough time my son was having 4 - 6 weeks after IVIG; we thought it had completely failed. At 7 weeks, just as I had given up hope, we started to see some miraculous changes. We are considering a 2nd IVIG, as he has backslid after getting 75% better, but if we do it again, I am definitely going to focus on detoxing his body following the IVIG.

How awful! I wonder what her problem was. We go to a mercury-free dentist, so when I told our hygienist about PANDAS, she got it no problem. They have lots of patients with autism and other health problems working with holistic doctors, so they are very open-minded. I have to say, I do talk to other doctors about PANDAS, in hopes that the information I spread will help a child at some point.

Ha ha! This is what I was thinking - so ridiculous! I was glad to hear your mom defended you and your son so strongly! Hold on to that love and forget your aunt for a while.

I'm so sorry you're having to deal with this, on top of your daughter's illness! From the way you described what each said, it doesn't sound the doctors differ on what is happening, just how to treat it (or whether to treat it in this case). It sounds like your psychiatrist is knowledgeable enough to know that strep or viruses can cause psychiatric symptoms, which is good. But she doesn't know how to properly treat it. Also, I think it's very wrong of her to demand that you only see her or Dr. B. - she is a psychiatrist and he is an immunologist, so how could you possibly replace one with the other? She may be "highly respected in her field," but she didn't present herself very well by making this demand on you. I've written off a couple of "highly respected" doctors so far and suspect that "highly respected" does not refer to how the patients/parents view them - possibly just reflects how big an ego they have. Also, if your daughter is hallucinating, should you maybe consult a neurologist as well? I believe Dr. Trifiletti is a neurologist, but not sure.

If you live near NJ, you might consider seeing Dr. Trifiletti (Ramsey, NJ) or Dr. Bouboulis (Darien, CT), who I believe have more experience with PANDAS than the doctor mentioned in the show.

Every time I try to log in through Facebook the whole browser closes down. This was happening yesterday too. Anyone else seeing this??

Can you call your pediatrician and ask if steroids could cause this? Or this that the doctor you can't get a hold of? With that many bloody noses, I would get him in to see any doctor (ped or urgent care) today and ask what could be causing it.

I would definitely keep him on any supplements that are supported by lab testing - anything he's deficient on or needs to support his immune system/gut. My son was on a number of supplements and I was getting pressure to reduce costs, so I cut them down to what I thought was the bare minumum (probiotic, neurotransmitter support, multi, anti-fungal), but one year later he had his sudden, severe onset of PANDAS and I realized that all those supplements were probably necessary. We just hadn't seen any dramatic improvement in his mild behavioral issues or asthma, but we didn't realize that they were preventing worse from happening. We have since added back glutathione, digestive enzymes, vitamin D and pantothenic acid (last two based on updated testing for deficiencies). If the issue is cost, can you find any of his current supplements cheaper? I found a local vitamin shop that discounts everything in the store every other weekend, so I just have to time things right and I save a fair amount. Also, you can look online for lower prices on the same things. It's a little time consuming, but maybe better than cutting down on the actual supplements. I've found the doctors who say that supplements are a waste of money aren't looking at the whole picture - they are the conservative, symptom treatment-focused docs (probably the same ones who don't believe in PANDAS).

when you say .the above bold type....is there such a thing as classic pandas....and what about pitands....?? like doctors lump everyone together........i would say you have pans or pits.....i'm not a doctor, but especially with your ds reaction to the ivig and 75% better and i'm not trying to reach into your wallet..but the more i read,,,it seems like 2 ivigs are required, in general...just talking out loud do you still have an infection going on...are you saying there is still strep.? and how do you know there is a problem with methylation cycle? or do we just want to call all of these infectous/autoimmune disorders/conditions/syndromes...how about IA or IAD, IAC, IAS??? I agree. I guess that's what I was trying to say. He has PITANDS, other infections than strep which haven't been addressed, probably chronic viruses that his immune systems can't fully get under control. The DAN doc thinks there's possibly still strep in there, just hidden by biofilm, which makes sense because his titers are back to normal since testing a little elevated last August. They were normal in Oct. '09 and again in May '10. We had genetic testing done a couple of years ago which showed problems with his methylation cycle. This is done by Dr. Yasko. Maybe I shouldn't have said "classic" PANDAS, but it does seem like some kids can be brought back to baseline by antibiotics or IVIG, and we've never seen that.

Thanks! That makes sense. I'll make sure he tests for those soon. How much of the probiotics do you give your boys? I'm giving 2 Florastor and 2 Lacto Tri-Blend per day - he just turned 10 and is 65 lbs.

I just emailed Beth Maloney to see if she knows. We are in the same boat - no Discovery Channel! The Mystery Diagnosis website has past episodes posted online, but I didn't see this one up yet. Not sure how long before they post them.