mama2alex

Yes, my son had neurotransmitter testing done by NeuroScience and has been on supplements for years (4 or 5 years, I think). We recently retested and made some minor changes, but I didn't see it make any difference in his PANDAS symptoms. That said, I wouldn't take him off because I suspect we would have even more problems without them. This was recommended by our DAN doc - I don't think this is something a "mainstream" doc would test for.

Wow, I'm so sorry you had this experience! I think he has seen more PANDAS kids since then (he told me he has 8 or 10 of them, I think), so I think he's learned more about it out of necessity. Also, maybe Dr. T has talked to him - he said he knows her and trusts her judgement. When I showed him our Cunningham results, he mentioned that he has another family who are expecting their Cunningham results soon. So I do think he's at least starting to become aware that there are things to look for other than ASO and Anti-DNase B titers. I definitely understand the frustration with doctors who don't believe, don't get it, or just don't seem to care. I was very nervous before the appointment, not knowing how he would respond. I know I wouldn't handle "I don't have anything to offer you." very well. Dr. Lloyd strikes me as very cautious and conservative, but I do think he's starting to "get it." On the phone with him today, I referred to my son as "suffering" and he said he definitely agrees with that characterization. He genuinely seems to want to help and I think he now realizes that a few risks have to be taken for these kids since all the science isn't there yet. To help him understand our situation, I wrote out a letter describing what happened this summer (also so I wouldn't have to retell the whole story in front of my son), and gave him a list (over a page long) of my son's symptoms since this started in June. I wish we had a video, like SFMom, but my son doesn't have tics, and we never thought to take a video last summer, when things were at their worst. I do think the list made an impression though! I also gave him a copy of the "Saving Sammy" book, and he said he would read it. My hope is that he will learn from our experience, and be able to help my son and other kids in the future.

We saw Dr. Stiehm, Dr. Kobayashi and Dr. Chen at the UCLA Pediatric Immunology Clinic. Dr. Stiehm said he's treated 12 PANDAS patients, but only 2 of those with IVIG (don't know what treatment he gave the others, or whether they've had any success). We are following up with him in about 1 1/2 weeks to get our Pneumovax challenge results - this will possibly give us a diagnosis of Selective Antibody Deficiency. Since we haven't gone through the entire process with him yet, it's hard to recommend. It might be worth an appointment though. I also really liked Dr. Kobayashi, but he is based in Omaha, NE and only visits UCLA occasionally. We are up in N. California, so we will only be following up by phone.

I may just be tired, but I couldn't find the location or contact info for the California office. Do you have it, or should I just call their Florida office and ask? Thanks! Jennifer

Just wanted to clarify that we are going from 250mg daily to 750mg EVERY OTHER DAY. This equals out to 375mg per day, but with a day to rest in between. The doctor also said that the higher you go, the greater the risk of severe side effects such as renal failure, heart arythmia, and some other scary things he outlined for me. We're going to try it out for a few weeks and if I don't see any positive changes, we'll go back down to 250mg. I think the doctor we're working with is somewhat conservative, but thankfully also willing to take some chances because he realizes what we're up against. Well then this makes me want to raise my son's dose of 250 to 750 or 1000 of zith to see if it makes a difference with the tics. Would appreciate any and all opinions. Linda

Linda, He's 60 lbs. The doctor is Frederick Lloyd at Palo Alto Medical Foundation in Palo Alto, CA. I will post it on the docs thread soon. I promise to post if I see any changes with this increased dose.

Yes, thanks SFMom, it is Frederick Lloyd. And it was SFMom who gave me his name - thanks again! He said he has some other PANDAS patients (I think he said 8 or 10, but can't remember). If others have seen him, would love to hear your experiences (you can PM me), but our first impression was definitely good. I gave him my copy of "Saving Sammy." He said he'd heard about it, but hadn't read it yet. My goal is for him to learn more about the experience of PANDAS, as I think this is what makes doctors more committed to helping.

Yes. I'll try to remember - my biggest challenge these days

Thanks for posting this - really interesting! Do you have an article or website that talks about abx depleting biotin? We are going in to our DAN doc soon to test my son's vitamin/mineral levels. Our DAN doc is doing a lot with Lyme (long courses of antibiotics), so I'm also going to ask him for a good support protocol for the antibiotics. I will definitely ask him about Biotin.

We met with a new pediatrician yesterday and he has several other PANDAS patients. He seemed to get it, in that my son's terrible behavior during the appointment didn't phase him at all, nor the fact that he was too afraid to go right across the hall to the bathroom by himself (he's 9). He was also just very kind and seemed very sympathetic to the fact that PANDAS parents can't wait for the research and we have to do some experimenting in order to get our children well. I asked about doing high dose Augmentin. He was hesitant because he said there's a risk of something called clostridium dificile, which is a toxic bacteria in the gut that can get out of control on Augmentin. If that happens, you have to go after it with another antibiotic, and once it happens you are more susceptible to it in the future. He also said there's a risk of pseudo tumor cerebrum, which I think is swelling in the brain. That resolves when you go off the antibiotics. Has anyone else heard of these? Anyone know how much of risk these are? All this scared me a little, so I didn't push to try the Augmentin for now. He did agree to up our Zithromax to 750mg every other day. He felt this was safer than high dose Augmentin. Someone else here posted that they were doing this dose of Zith, but I couldn't find the post or remember who posted. I'd love to compare notes. We'll start this today and I'll post our (hopefully great ) results at a later date.

Thanks Colleen. I feel like we've leveled off at a place that isn't anywhere near acceptable. It's better than last summer, but he's not well yet. I think it's worth a try to switch to Augmentin and see what happens. After talking to Dr. K, we suspect that his first full-blown PANDAS episode was at age 5 1/2 when he was hospitalized for pneumonia. He had panic attacks at night which subsided slowly over the next 6 weeks, then completely resolved. I looked back at our records and he was on Augmentin at the time. There may have been other PANDAS sypmtoms, but I didn't know what to look for and there was so much going on with his health at that point, I can't remember all the details. Doing both antibiotics at the same time is an interesting idea. Do you now think your daughter wasn't having an allergic reaction to the Augmentin? Is there a way to test her for an allergy to it - like a skin test? Thanks again!

We have an appointment with a new pediatrician tomorrow. I've heard through the grapevine that he sees a few other PANDAS kids and I'd like to bring up the idea of upping my son's antibiotics and possibly trying Augmentin. He improved some with Azithromycin (250mg) and then seemed to be 95% better after 3 days of prednisone, but we seem to have backslid some and now leveled off. He's doing better than this summer, but still has many PANDAS symptoms. Does anyone know what the Augmentin dosage for a 60 lb kid would be? We are planning to do IVIG as well, but also want to try this while we're waiting. We'll get our Pneumovax challenge results back in about 1 1/2 weeks (this will tell us whether he has a Specific Antibody Deficiency to strep pneumoniae) and then we'll figure out the treatment plan with regards to IVIG.

I'm really sorry this is happening to you. I'm not sure what to tell you, but hang in there! If the doctor prescribed it already and the insurance co already covered it once, you should be able to get coverage again. You may just have to fight for it this time. Don't give in. Good luck.

We upped Azith to 500mg per day for 10 days at one point to make sure we wiped out any strep. I have no idea if it worked because he still has symptoms, although he's a little better than he was this summer. I'd say it's worth a try!

The first doctor I called (beside our pediatrician who was treating him for pneumonia at the time) when our son had sudden onset OCD was our DAN doctor. He was immediately convinced it was Lyme and ran an initial test, which came up negative. We live in California, son's never had a tick on him, or a bullseye rash. For us, pursuing PANDAS just made more sense, especially since our Cunningham test came back in the PANDAS range, and he had elevated Anti-DNase B, and Zithromax and Prednisone helped some. If PANDAS treatments are not effective, we may pursue the Lyme diagnosis more seriously at some point. It is definitely confusing!

Did they do a rapid strep test? If so, didn't they follow up with a culture? My guess on what they meant by "strep etc" is they are testing ASO and Anti-DNase B, which are strep titers. This might tell you if your son has had a recent strep infection, but sometimes they come back within normal range even though there has been a recent infection. In other words, these tests are not reliable. If they think these tests rule out PANDAS, they are misinformed and you need to find another doctor. I understand your neuro is considered top in the state, but if she didn't do any tests and didn't treat him for the diagnosis she gave, I have a hard time understanding why you trust her. I'm seeing a lot of red flags here, and think you should definitely consider seeing another doctor. Also, I would insist on being given complete copies of all test results so you can refer to them when you need to, and also to take to another doctor, if you decide to get a second opinion.

I posted on this a month or two ago, but wanted to reopen the discussion as this continues to bother me. A friend of ours who had rheumatic fever as a child wrote the following in an email regarding our son's PANDAS: "Strep is definitely one of those infections that can trigger a complex immune reaction that can eventually result in an auto-imune reaction. In my own experience with rheumatic fever, strep throat was the trigger. Further...as was beaten into my brain over and over again by my pediatricians throughout my childhood... the syndrome could easily reignite if I came down with strep again. The solution they developed was (1) I stay away from anyone possibly infected by strep and (2) I stay on large doses of penicillin every day until I was 21 years of age. Their prescription was simple but very strong: I was on IV antibiotics for weeks in the hospital; and, after I returned home, I was on 1.6 million units of Penn-Vee-K daily for 18 years. Now... after the rheumatic episode I came down with a lot of illnesses (just like all the other kids), but none of them were strep infections. And - here is the important part- none of them triggered the autoimmune response regardless of their severity. The rheumatic response was SPECIFICALLY tied to strep infections. No other infection would trip the trigger." I bolded "large does of Penicillin every day until I was 21" because the whole idea of "prophylactic" antibiotics continues to bother me. If they gave "large doses" for RF, why not for PANDAS. It's the same underlying cause - strep. I plan to take this up with at least one doctor soon, but it's been so hard to find anyone in N. California who knows what they're talking about, I haven't had the discussion with a doctor yet. I think someone posted recently that they saw dramatic improvement in symptoms after PEX AND being on IV antibiotics because of some complications. I thought this was very interesting. Is there anyone on the forum who's on "large dose" antibiotics as opposed to the lower dose of "prophylactic" abs? Or has anyone had this discussion with a knowledgeable doctor? I'd appreciate any info you have. Also, has anyone found any articles/studies on this? Thanks! Jennifer

Hi Beth, When you go in tomorrow morning, you should ask them for a list of the tests they're running and make sure you're clear on what each one is for before you leave. Much easier than trying to get the info over the phone. No one hear will be able to answer your question because every doctor approaches this differently, depending on how much they know about it and what they're specialty is. Also, I saw your other post, and I'm wondering what this doctor did for your child at the time of diagnosis? Did they prescribe antibiotics, prednisone, anything? Or did they just say this is PANDAS and nothing can be done? If so, you may want to get a second opinion. They can be world famous and still not know how to treat PANDAS, even if they do believe in it. I'm finding that out first-hand. There's a thread on doctors who've treated PANDAS on this forum - it's at the top under "Helpful Threads for PANDAS." Also, you can email Beth Maloney, author of "Saving Sammy" at info@savingsammy.net and request her latest version of the list of doctors she is compiling. In the meantime, try browsing through as many old posts as you can. Look for topics that catch your eye and read. You'll learn a lot and be better prepared to discuss what needs to be done with your doctor. Keep us posted! Jennifer

I just looked at my son's labs from a month ago. His neutrophil was 39; normal range of 49 - 74. His white blood count was 5.8; normal range 4.5 - 13.5.

I thought I'd mention that my son had an ear infection that was cleared with full-dose antibiotics several weeks into prophylactic Zithromax (250mg/day). So I'm not sure the lower dose would necessarily protect against pneumonia. But if your child is on full dose, I assume that would protect them.

Thanks for being brave enough to post on this topic! I think it's really important that the vaccines are openly (and calmly) discussed on this forum. They are a risk for our kids and we all know it, but sometimes the decisions aren't simple. I know what a tough decision this is, as we are in the process of making it ourselves. Our son has had 6 pneumonias, including two hospitalizations, and is being tested for Specific Antibody Deficiency to strep pneumoniae bacteria. As SFMom mentioned, our son had the Pneumovax vaccine two weeks ago to test for immune deficiency. We went through an agonizing decision process beforehand, but thankfully he is doing okay. But now we are faced with the H1N1 decision. What a nightmare. A lot of kids at his school are sick, but since the CDC recommended no more testing for H1N1, nobody knows if their kid has had it or not. Luckily, our ped is testing and she said 80% of the flus they're seeing are H1N1. She also knows what symptoms to look for versus regular flu or non-flu viruses. For now, we've taken our son out of school because he is so exposed up there - they are doing nothing to prevent the spread - no hand washing, purell, nothing. We're pretty sure we're going to give him the H1N1 vaccine if we can find it in thimerisol-free vaccine form. We don't want the live virus (mist) and NO MERCURY for us. Good luck and please keep us posted on how it goes.

I don't know of any other illness with psychiatric symptoms which responds well to antibiotics other than PANDAS. So I think you are on the right track. Maybe you can email Kathy Alvarez to get more info on why he might have high Cam Kinase but normal anti-neuronal antibodies. My son had Cam Kinase of 153 and was only in the high range for anti-lysoganglioside, but I never emailed her for clarification of what each anti-neuronal antibody results means.

Judy, I've read so many posts now that I was surprised to find tears welling up when I read yours. I think it's because you just laid out what we're all feeling or have felt at some point - the grief, fear, anger, frustration and tears. I hope Dr. K and your immunologist are able to give the help he needs immediately. Don't waste any time with doctors who don't "believe" or can't help you. You are on the right path, just keep going and you'll get your son the help he needs. Please keep us posted. Jennifer

Yes! Eosinophil level was 9 (normal range 0 - 5.0). What does this mean?? The immunologists at UCLA never mentioned it - I just looked it up after reading your post. Also, lymphocytes were just above normal range. Would love to know what that means too.