matis_mom

Pandas16 I am so glad TSO is working out for you as it is for my son. I just wanted to add that the reason Dr. Lin starts in a low dosage is that one might get sick if started in a high dose so his method is to introduce TSO gradually. Dr. Lin's patients are children so it is important to start at low to make sure young ones can tolerate them. My understanding is that TSO is not from Thailand but from Germany. A small Germany pharmaceutical company ( or something like that) is making them but since they can not get German government's permission to market them and sell them, Ovamed somehow took TSO to Thailand Government and got approval from Thailand and hence there connection with Thailand. I guess Thailand government is a lot more progressive than that of Germany. When I ordered TSO, they came from Boston. (????) Anyway I was under impression that TSO was made in Germany. Can you correct me if I am wrong here, Pandas16? pathfinder Pathfinder, Do you mind share a ball-park figure of how much it costs a month? And do you need a prescription? Thank you!

This is so encouraging! Thank you all for sharing, and my prayers are for continued and long lasting recovery for everyone. I have a few questions if you don't mind, please? Is this something that would have to be continued for life, or would one be able to get off this stuff eventually? For our family the cost would be a huge issue, but we could manage it for a few years I suppose... lifetime seems very intimidating! (on the bright side, my kids are tiny so we probably won't need as much ) Also, is there only that company in Thailand to get it from? I am a little uncomfortable with having parasites shipped to us from clear across the globe! But hey, if it works, I'll try it I'm thinking there's got to be a local alternative, there's got to be, or maybe we can make it happen? Maybe those of you who are more involved in the Autism world can share any new developments. Thanks to all for sharing, thanks to those who have been brave enough to think and act outside the box!

She obviously thrives on challenging materials, and she KNOWS she'll do better in the honors class, so I would push for that. But, I would not get her hopes up too much, just in case. That is a lot of pressure for her to think the test will determine her placement... does it really work that way? I would talk to the teacher or whoever at the school and see what happens. The other day I saw this quote (can't remember the exact words): "things turn out the best for those who make the best of how things turn out". So, if she doesn't make the honors class (and really, it would not be that she didn't "make" it, she and you know she is smart enough but PANDAS is getting in the way), try to make the best of it and find other ways to challenge her at home. Maybe this will be an extra incentive for her to work on her ERP (although we know there is only so much they can do to help themselves )

Goodness, I just read this last post of yours... jaw pain is a very typical symptom of Lyme Disease! I had this myself at the onset of my illness. Heart issues have also reported in Lyme patients. Get to an LLMD!

Hi, I've not had time to read all the other replies but it seems your son is going on a 4 week cycle. The tiredness is what caught my eye... My son also had the tiredness, sleepiness. He also seemed to get worse every four weeks (usually around full moon). Some say this is due to the fact that parasites (which sort of "protect" the borrelia) have a four-week cycle. It's all very complicated for me to explain. Anyway, ds was first diagnosed with PANDAS with underlying Lyme Disease. All Lyme tests were negative at the time so we just pursued PANDAS treatment, but he could not sustain his gains. So, two years later, he is testing positive for Lyme. I don't know if you have already ruled Lyme and co-infections out, but for starters I would really look at the lists of symptoms (you will find several online) for both Lyme and Bartonella, and see if you find anything that would lead you that way. Just keep in mind no test is 100% accurate.

Hi, That last statement reminds me of my son... he never SEEMED to get sick. Never complained of anything, but he had some mild issues that now in restrospect I can see where PANDAS. He had episodes of stammering, eye-blinking, etc. Only once did we "catch" the strep, because a sibling had it. His swab turned positive sooner than anyone elses, yet he was not in any kind of pain, no fevers, nothing. That was until he got a nasty flu (and probably strep too) and he went for a nose dive... Anyhow, my point is, in our families strep does not present like your typical sore throat/high fever thing. It's a long story but over the last two years we have been going crazy trying to erradicate strep. Just yesterday my husband went to see his doc, his ASO was 250 (we've been cheking and it seems to be always at that). The doctor did a rapid just in case, and it was positive. So, like others have said, just because she did not have the typical symptoms, it does not mean she did/does not have strep. Also keep in mind it can be in other areas beside the throat/tonsils. I would say as a first step, get the whole family cultured and if possible run titers on everyone. You may have a carrier and taking that out of the equation now will save you a lot of grief in the future. The fact that symptoms subside with abxs is a strong indication you may be dealing with PANDAS. Also, considering you live in the NE, I would test for Lyme and co-infections (my son has those too, I don't know if they are causing the PANDAS or just producing the same symptoms --if you like up Bartonella in particular, the neurological symptoms are very similar), and even consult with an LLMD to rule it out. I am glad you are seeing good results with Omega-3s and Vit D. Best wishes for complete recovery!

Thanks for posting. It's reassuring for me to read that transmition when time <24hrs is pretty low. Last week I pulled a huge tick off my dd5's head (she on 30 days amox, thanks to the dear pediatrician), and today the 3yo and 15mo old! But I am positive they were NOT there long, because I've been thorougly checking each day. I am so glad I bathed them early today!!!

I am transcribing from a photocopy our GP gave my dh... maybe it will be useful to someone. ANTISTREPTOLYSIN O TITER, SERUM Synonyms ASO Specimen Serum Container Red top tube Reference Range: younger than 2 years of age: usually <50 Todd units; 2-5 years: <100 Todd units; 5-9 years: <166 Todd units; adults: <125 Todd units. A rise in titer of four or more dilution increments between acute and convalescent specimens is considered to be significant regardless of the magnitude of the titer. For a single specimen, ASO titers <166 Todd units are considered normal; but higher may be "normal" in demographic groups or may be associated with chronic carriage. Use: Useful in the evaluation of patients with suspected acute rheumatic fever or other sequelae of poststreptococcal infections. A marked rised in titer or a persistently elevated titer indicates a recent or current infection with beta-hemolytic, group A streptococci (Streptococcus Pyogenes) Additional Information: Streptolysin is a hemolysin produced by group A stroptococci. In an infected individual strepotolysin O acts as a protein antigen, and the patient mounts an antibody response. A rise in titer begins about 1 week after infection and peaks 2-4 weeks later. In the absence of complications or reinfection, the ASO titer will usually fall to preinfection levels within 6-12 months. Elevated titers are seen in 80% to 85% of patients with acute rheumatic fever and in 95% of patients with acute glomerulonephritis. Clinical and laboratory findings should be correlated in reaching a diagnosis. Hope this helps someone out there!

You are right, I think we need something else... DH is going to be spending tons of times outdoors (work related) so the doc was trying to take that into account and not give him something he couldn't be out in the sun too much with, but I wish they had given him clindamycin or something. Maybe we'll give it a few weeks and see. Also, a friend was telling me she heard/read about a abx-resistant strain of strep that was "accidentally" included in the flu vaccine... has anyone heard about this. I will follow up with her and see if she has any links to articles...

DH went to the doctor to get his thyroid re-checked. Since they had to draw blood, he asked for ASO again. Again, it came back at 252 (both of us seem to be stuck on that number no matter what). The doctor (whom I also see) was not sure if we should treat or not, since it does not seem to come down either way, maybe this is our "normal"... But she run a rapid just to see, and it came back positive Now, DH has NO SYMPTOMS. She gave him a month of Amoxicillin 875 bid. Will this work, or should we be asking for Clindamycin? Is he considered a "carrier" then, or is carriage just when you get a positive culture (as opposed to rapid) without symptoms? I don't know what to do. I sort of had the same scenario, and when I started taking Augmentin, I actually developed all the symptoms, had to switch antibiotics, and finally got my tonsils out (dh's tonsils have been out since childhood). After all that, plus a round of Cipro, my ASO is still over 250. Right now I'm on doxycycline for Lyme, and I'll probably retest after that. I really don't know what to do. Good news is DS is not doing too badly but I was wondering how come we see symptoms when he is on a boatload of abxs for Lyme...

Wilma, We had been treating my ds for PANDAS for two years and were getting ready to do plasmapheresis. Something kept bugging me and we went for a second opinion with Dr. Bouboulis. He ordered a tons of tests, among them a Western Blot (just through Labcorp). Much to our surprise, ds had 4 bands positive (5 needed for an "official" positive). Keep in mind we started this journey with an LLMD who was 100% sure he had Lyme AND Pandas, but all bloodwork was negative (even through specialized labs, and they kept running them) and so we stopped the Lyme treatment and just stuck to the PANDAS part. I wish I had known back then how unreliable those tests are! Could you do a trial treatment and see how she does before proceeding with IVIG?

Wow, that's a lot of bites for our families in the last week!!! Yikes!!! My dd5 had a tick attached to her scalp. I don't think it was more than 24hrs, but definitely a while because the site was already swollen. I took her in an the pediatrician gave us Amoxicillin for 30 days... yipee! The fact that she had three huge swollen lymph nodes in the back of her head, on the same side as the bite definitely helped our case I guess we should be looking on the bright side and be happy about our new-found awareness, but it's turning into paranoia for me! But just think of our neighbors who are not aware... they are probably getting bit just as much as we are and don't know it???

I don't have the answer but I think the problem is it's hard to be sure 100% how long the tick has been there. Just last week I found one in my dd5. I've been bathing/washing hairs every single night to check for ticks, so I do not think it was there for more than 24hrs, but she already had a huge bump (it was on her head, so the hair was covering it completely, but she felt it, thank God!). I pulled it out and cleaned it/put antibiotic cream on. A few days later, I noticed three HUGE lymph nodes at the back of her head, on the same side as the bite, YIKES!!! I took her to the pediatrician yesterday, and she said the lymph nodes could be just a reaction to infection on the site, or it could be she fighting something else from that tick, but it's too early to test for Lyme. I do not want to wait to test, and let the Lyme (or whatever) get a head start, so we are treating her with a month of Amoxicillin. I sure hope it works!!!

Vitamin C can also give you an energy surge (works well for me at naptime when I feel like I'm crashing!), so I try to take it early in the day. Also, too much will give you the runs... But thanks for the tip, I had heard this and I really need to do it for my 7yo who is miserable right now.

Sorry but that makes me MAD! How come all the neighborhood kids have to wind up at your house when you are the one with sick kids??? If that mom can't give you sympathy, then just skip the explanation and say "we can't play today." For goodness' sake, you must be exhausted. TAKE A BREAK. Bolt the door, put a quarantine sign on it, and get some good videos to watch together or something. Or go to a park, take a long drive, whatever. I'm getting carried away here... You do what you think is best for your family. Prayers for a good weekend...

That is just AWESOME!!!

Thanks for replying. We are kind of on the same boat here... Two kids being treated for Lyme/Co-Infections/PANDAS, my husband had confirmed Lyme and got treated, I got it a few weeks after him but was told I was "depressed". That was three years ago, when we moved to a property with land/woods. I've been having Lyme symptoms off and on, and finally got an ID doctor to treat me for a month (I was seeing him for strep originally, but no matter what we do --tonsils out, different abx-- my ASO remains high). I do feel a lot more energy on doxyciclyne! I can't go the whole LLMD route for myself right now, but I encourage you to pursue it and see how it goes. Keep us posted. Good to know there were no long-term side effects from those abxs! My kids are getting weekly Bicillin shots (on top of the oral abxs), and we are doing them at home, which seems to cut down on the drama part. Not that they hurt any less (I've had them myself, so I know how it feels), but at least we don't get the dreading, the wait, the anticipation.

MMC, My big question to you is this: Have you had any long-term health problems BECAUSE OF THE YEARS OF ANTIBIOTICS? That is my one concern right now. My ds has been on abxs for 2 years now. He is currently being treated for Lyme too. He is on so many antibiotics it's ridiculous. So, you would put my mind at ease if you told me you are perfectly healthy now (although a bit OCDish every now and then!) Thanks for sharing!

I just know he's going to be the one who figures this all out. The 2+ hours we spent with him was amazing. Wouldn't that turn the whole PANDAS Lyme world on it's ear if he finds it's a totally different bacteria that's doing this? Very interesting! It's always those who think outside the box who make the great discoveries! So refreshing to see someone is still looking with wide-open eyes at this problem

I think for our family is just something to be aware of. While it's definitely NOT the cause, it does agravate things. I think it's very helpful to know what is making them worse (be it pollen, something they ate, a traumatic event), just so I don't go into panic mode thinking somebody must have strep. Same thing for us around full moon, ds is always a little worse when the moon is full for some reason. I guess there are so many triggers, you can't avoid them all, just be aware and understand why they feel that way, and understand that things will pass.

Glad things got under control with the wheezing! And as a side-kick you are getting some relief from OCD I would not worry about long term effects of steroids at this point. Just get her stable and take it from there.

Amazing! Keep the updates coming They are my light at the end of the tunnel!

Wow, that's a very long wait... I'm so sorry you are going through this and have to wait this long! Do you have a pediatrician or anyone who can prescribe abxs to get you started? Have you tried herbals yet? Also, if you have not done this already, call the LLMD and explain how desperate the situation is, and to please let you know if they have any cancellations.

Yes, with my 15yo. There weren't like that before, but now they are "gone". The pediatrician thought he had had them out too!

My son has been playing travel soccer all along. His knee and heel bother him at times, but he can manage (only a couple of times he had to step off the field). I think it's good for them to be active and sweat a lot, and my son does better when he is busy anyway. Just make sure they are well hydrated. His coach knows what he is going through and has been great.