MSmom

Vitamin D--- While mainstream medicine is still saying 30 is normal range, many many medical professionals would say 50 is a more appropriate minimum. Our DAN doctor supplements with D3 if under 50. And it takes a LOT of D a day to get the numbers up (we take 7000 per day, but you need to have it tested before you take this much D. Please have it checked before supplementing above the recommended dose, and use D3 only.) Low IgG--my daughter's is in the 400 range, and the DAN doctor believes it is too low. He does not like the idea of doing IVIG to get this number up, but is treating her immune system as a whole. TSH--My daughter's TSH was in the borderline "normal" range as well. Mainstream endocrinologist did nothing at that point. My daughter was gaining weight at an incredibly rapid rate and had all symptoms of an underactive thyroid--dry skin, extremely low body temp, in addition to the weight gain. Our DAN doctor did additional testing and found that, although daughter's body was making enough thyroid hormone, her body was not converting the thyroid hormone properly. He addressed it with supplements, and it corrected. All of the symptoms corrected, and she returned to a healthy weight. Many PANDAS kids have severe immune issues that affect many parts of their bodies, in addition to their brains. My daughter and son are extreme cases, with severe chronic health problems. The immune systems and methylation pathways of these kinds of kids are typically a mess. Dr. B is very knowledgeable about PANDAS, and very kind (we have seen him also, and my daughter did IVIG there. He was not the physician we needed,though, as my kids have had PANDAS too long, and their PANDAS is too complex (both were teens when diagnosed.) Dr. B was very helpful to us though, in that he detected daughter's mycoplasma infection, low IgG, and positive ANA, which no other doctors had found. Antibiotics and IVIG made my daughter's PANDAS worse, however. (I do believe IVIG can be helpful if the PANDAS is diagnosed early and young.) We now see a DAN doctor exclusively for the PANDAS issues, and he has been the most help of any physician we have seen. Pam (I am NOT a medical professional, and this is NOT medical advice. Always check with a trusted doctor before you try new things. And yes, finding a doctor you can trust is the tricky bit.)

My son got traditional metal braces at 14. He did worsen considerably. He pushed through it and he now has beautiful teeth. He homeschooled much of that time, so it wasn't as bad a time as it could have been. My daughter has tried to wear Invisalign for the past two years, and we officially gave up on them a few weeks ago. She worsened every time she tried to wear them. She has several physical autoimmune issues as well, and those flared each time also. Both of my kids have had PANDAS for years though (went undiagnosed), and they are both physically ill with immune issues, so they may be a severe case with the braces. The orthodontis did say that the microtrauma from the braces has triggered flares in the immune system illnesses in some of his other patients as well. He was very understanding about the whole thing. (My daughter's was the worst case of that he's seen, though.) MsMom

Wow, thanks for this. This may explain why my daughter reacts so badly to long term abx (mentally) and to HD IVIG (physically and mentally.) She has many physical issues (autoimmune (Sjogren's antibodies) and metabolic), and we know for certain she has methylation issues (from DAN doctor), but I never connected this with the abx and IVIG problems. I did suspect that high dose IVIG was too much for her body. My daughter (and son) have been ill for over 10 years. They are young adults now. They have many issues going on, and we are beginning to lose hope. We don't know what else to do, since we've tried both abx and IVIG. Both of my kids are on many supplements, and we know for certain they are detoxing slowly, which the DAN doctor is addressing. They do improve on the supplements, but we need more. Winter is the worst, because they pick up infections. (They react with PANDAS symptoms to ANY infection now, not just strep. My daughter could not even wear invisalign braces, because the microtrauma in mouth from it set off her immune system. Not sure if there is hope for this severe of an issue. MsMom

There is a huge body of evidence that says that autism is rooted in autoimmunity. Some autistic kids do recover with biomedical treatment. (Recover is the wrong word--more like improve dramatically. But will probably always need biomedical treatments.) It's all a mixed bag of autoimmunity---call it what you wish--PANDAS, autism, sensory integrations disorder. Just depends which symptoms they are unlucky enough to develop, and which form the autoimmunity takes on. P

No, we haven't done steroid treatments. Yes, we tried several other antibiotics. My daughter (and son) both have quite a few physical ailments (immune and metabolic.) They are older (teen and early twenties), so the late diagnosis has probably hindered recovery. The autoimmunity has just gone on too long I think. MsMom Have you tried any steroid treatments? If so, did your DD improve with that? I think this is the first time I've seen somebody say that neither abx nor IVIG have helped at all. So you tried abx other than Augmentin? Does your DD have any other conditions that could further complicate the PANDAS or its treatment?

Forgot to answer the second part of the question--yes, we use Motrin all the time for some relief (but doesn't help much.) I wish there were a simple answer like antibiotics or IVIG. We've done both, and both worsened the condition for us. MsMom

My daughter's OCD got progressively worse, the longer she was on Augmentin. She improved tremendously when we discontinued it. I don't think it was a herx. It continued and worsened over a long period of time. We are unable to use abx for our kids' PANDAS. MsMom

I'm with you---my kids also have every one of those diagnoses, minus the rare anaplasma infection. They eat frequently throughout the day, protein with every snack, lots of complex carbs. Also, fat at bedtime. MsMom

Both of my kids have been diagnosed with both hypoglycemia and yeast issues. MsMom

Well said, Nancy. I believe immune and metabolic issues are at the core of all of this stuff, whether it's called autism spectrum, PANDAS, sensory integration disorder, etc. and that there is plenty of evidence of that. Many resarchers believe "autism" is truly an autoimmune and metabolic illness. Kids' "autistic" symptoms often improve with immune treatment, just as PANDAS can improve. All of these disorders probably occur in kids from a similar genetic subset. Different parts of the brain and body, different manifestations. I don't think the label really matters. I'm NOT saying PANDAS kids are "autistic." I do think they all have autoimmunity in common. They are all immune and metabolically challenged kids. Just my opinion. MsMom First of all, nobody, including me, is saying that if you have PANDAS you are autistic or vice versa. But there DO appear to be points of commonality, and to ignor those is to ignor possible avenues of treatment, IMHO. Secondly, I personally would not refer to either PANDAS or especially autism as a "disease." Autism is just a label slapped on a bunch of regressive behavioral symptoms when no other identified diagnosis exists. It's a "default," and it doesn't accurately speak to anything, really, given the very wide spectrum evidenced under that title. PANDAS, meanwhile, seems to be well-defined in terms of it's being an auto-immune disorder, but pretty much everything else outside of that appears to be up for grabs currently. Again, not unlike autism, you have this very wide array of associated behaviors, patterns of regression (from debilitating to none, as noted by dcmom), comorbidities (again, none to a lengthy, exhaustive list), differing responses to identical interventions, etc. Thirdly, my son, along with several others of my acquaintance, WAS diagnosed with PDD in the depths of a PANDAS exacerbation, but those PDD behaviors have all disappeared with PANDAS -- not autism, but PANDAS -- treatment! So some behavioral relationship would appear to exist, however tenuous. I hear the indignance in your response, and I get it. I've heard it elsewhere, too, when I've noted something that appears to be concurrent or coincidental between "regular OCD" and PANDAS. And it's not just PANDAS parents who don't like having their kids likened to "regular OCD" kids; some "regular OCD" people bristle at the mention of PANDAS, too, as though you're insinuating they've missed something in their treatment regimen and you're blaming them for having OCD rather than taking an antibiotic and making it all go away. None of that is ever, ever my goal. Here's the thing. Each of these disorders -- PANDAS, OCD, autism, TS, etc. -- has this "unknowable" quality about it. Yes, they each now have some "standards of treatment," but everyone's still struggling to understand the full genesis of each disorder, the temporal relationships, triggers, full range of symptomology, behavioral expression, recovery versus remission, failure to recover or remiss in some instances, impact of physical and/or mental maturation, etc. And then there are the commonalities that continue to surface, glutamate being one of them. So is it such a stretch to consider what these disorders share, as well as what sets them apart? Couldn't we learn something from one another in that regard? If, instead, I stick to my side of the street and you stick to yours, we'll never know what we might've had in common or learned from one another because we're running on parallel courses. Incidentally, as you probably already know, some cases of so-called autism have already been found to have auto-immune origins, too, so I can't help but think that any sense of "separation" on that basis is on shaky ground, as well. Consider: Stop Calling It Autism Peace?

I am so confused---I have been reading about sucrose levels in the different brands of IVIG. As I understand it, Gamunex does not have sucrose. I also read that Gammagard S/D does NOT have sucrose but that Gammagard Liquid DOES have sucrose. Which Gammagard is more commonly used--S/D or Liquid? Doesn't sucrose supposedly cause more side effects? And, if that is the case, wouldn't the fact that Gamunex is flushed with dextrose (another sugar,correct?) cause side effects too? Help! I'm going cross eyed trying to figure this out!

I completely agree. My son is gifted with learning disabilities. It was very confusing for a while, until we found out about the LD. He functions MUCH better cognitively when he is feeling more physically well and when the PANDAS symptoms are milder. I think SOME (not all) of his diagnosed learning disabilities were actually from PANDAs. Daughter is gifted too, I'm sure, although she hasn't been tested, as she didn't exhibit any signs of LD. She was a model student, but then when her PANDAS hit HARD in 6th grade (she had actually had the symptoms on and off for several years), she presented like someone with severe ADD and also completely lost her short term memory to the point that she could not repeat what someone said immediately after they had said it.

I am curious about these same questions. My daughter had IVIG (1.5g) a little over a month ago, and she is worse than she was before. I know that sometimes things can get worse before they get better, but I'm getting nervous that the IVIG will not work for her, or will not work at that dose. We trust our PANDAS doc very much. There are just so many variables, and my daughter has had this for quite a few years now. She is quite physically ill as well, so may be a difficult case.

My daughter (16) has had definite, measured vision changes, which began shortly after the PANDAS symptoms began (about 5 years ago.) I didn't really believe her at first, although she kept telling me her vision was getting worse. It was confirmed by the ophthalmologist (and then I felt like a bad mom!)

Kim, I don't have much advice for you for local medical help in your area, but I wanted to lend my support! My daughter,age 16, has had several bouts of rheumatic fever illness following untreated strep, as well as PANDAS issues. It has robbed her of much of her childhood, as we didn't know what was happening until her last bout in 2009, but even when I figured it out, it was extremely hard to find help locally. Your son's illness does sound much like rheumatic fever, based on the symptoms and labwork--It's interesting that they changed his diagnosis. At least the doctors have realized your son needs abx until age 21 (although I agree that they may want to change it to a more effective one.) Our local docs were clueless and worse, a bit cruel, practically accusing my daughter of school avoidance (as she sat on the examining table, pale as a ghost, barely able to stand for 5 minutes at a time! I think they they thought Munchausen mom for sure!) She takes months to recover both physically and mentally following these bouts (close to a year.) In addition to the extreme fatigue, fevers, nausea, etc., she has to deal with the persistent thoughts and worries, confusion, lack of conentration, loss of memory, separation anxiety, and just anxiety in general. Thank God for this forum and the good medical help I have found because of it. I have felt in the minority here, having a child that is so physically devastated by strep, in addition to PANDAS. She just had her first IVIG a few weeks ago and is on Augmentin. I am praying this will be the turn around for her. She is beginning to give up. We have to travel for appropriate medical care, as there are no experts close to us. I hope you will find medical help close to you! (but if you can't, traveling is well worth it.) P

Nancy, The dose is intended as both ongoing PANDAS treatment and prophylactic I believe. (She was just switched from Zithromax to Augmentin----She was on Zithromax for a couple of months as both a treatment for mycoplasma and prophylactic for strep.) My daughter's dose sounds a bit lower than I am seeing on the forum. And I did wonder about the XR vs. the regular Augmentin. Thanks for the food for thought. I guess I need to bring these things up the next time I speak to the doctor. Pam -- Is this dose intended as a response to 1) a current infection, 2) an ongoing PANDAS treatment or 3) prophylactic? I think if you look up 875 mg. Augmentin, 2x daily, you'll find it is probably adequate for treating certain infections, including strep. There's a lot of anecdotal information out there, though, that suggests that perhaps either the XR (time-related) formulation of Augmentin or Zithromax are more effective at treating PANDAS. It could be because regular Augmentin's half-life is quite short, whereas Zith's half-life is very long (something like 73 hours, if I recall correctly), and the time-released formulation of Augmentin (XR) would theoretically leave the drug active in the body longer than the regular form, also. On the other hand, I understand that some find the regular Augmentin to be more effective against PANDAS, perhaps because it actually has a higher clavulanic acid component than the XR version. Lots of bodies of thought, unfortunately, and none of them necessarily applicable in every case; all our kids seems to respond differently to medications. You might search here on the forum for "XR" or "zith" or "clavulanic acid" or similar terms to get a broader perspective on the topic. Good luck!

875 mg of regular Augmentin, twice a day. Does this like enough for a 155 lb sixteen year old girl?

Ok, thanks for the info! Pam A pred burst would lower the results. Let Dr. Cunningham know that your dd recently completed a burst. Antibiotics shouldn't affect results.

Both of my kids are going to have Igenex testing (Comprehensive lyme panel and co-infections.) I have antibiotic prescriptions for both kids, but I called Igenex today and was told to have the lyme testing prior to starting the antibiotics. This is the same advice I had received previously from an informed parent. One of my kids is also on Plaquenil, and the employee at Igenex told me to have her stop the Plaquenil for 14 days prior to testing as well. I'm going to comply with this, as I figure the purer the test, the better. (But it is killing me to have these abx prescriptions in hand and not be able to start them yet!) Pam

We will be doing the Cunningham test soon. Would antibiotics affect the results? (We are getting ready to start them. Should we wait until the blood is drawn?) Would a 5 day Prednisone burst that ended on June 25 affect it? (We plan to have the blood drawn this week.) Pam

Yes, this was the time frame for us too! My daughter's first devastating event was in late 2006-early 2007. She had a VERY rheumatic fever like illness with migratory joint pain, fever, abdominal pain and nausea, nosebleeds, heart murmur, palpitations,confusion, sensory problems, handwriting deterioration, and SEVERE fatigue. She was sick with this for many months. It happened again in 2009, but our new pediatrician figured out she had strep after it had been happening for a few weeks. P

Thank you and good luck to you and your son! Keep on persevering. Pam Sorry you guys are struggling. I wish I had answers for you but I am trying to figure it all out too?! This is all completely confusing to me and I worry more and more each day too that I will not find the right solution for my son. Good luck and don't give up!

Thanks JAG. My daughter takes Plaquenil---it is a drug that is often prescribed for Lupus. She does not have full blown lupus, but does have some kind of autoimmune connective tissue disease/chronic fatigue health issue, so the rheumatologist she sees put her on Plaquenil. I'm not sure that would interfere with the steroid burst though. She fits all of the criteria for PANDAS, and also had a rheumatic fever type illness 3 times. along with the PANDAS, following strep. It's wonderful to hear a story like your daughter's. I will take your advice and remember to be careful of blanket statements. Pam

Thanks Fixit. All interesting questions. Yes, two docs have told me not to do the IVIG. These are integrative physicians I trust very much, but neither are well known PANDAS docs. One is a DAN doctor, a very brilliant man who is very much a PANDAS believer. He thinks that the risk of IVIG is not worth the possible benefit. (But he also doesn't use antibiotics for PANDAS--which in our case I believe has been a mistake. Had my daughter been on prophylactic antibiotics, I think we could have avoided her last episode of, not only PANDAS, but rheumatic fever, which stole her first year of high school last year (which was going so well--straight A's, friends) and has threatened to take away her entire teenage life.) The other doc is a very brilliant integrative medicine doc. He thinks that the IVIG benefit will wear off. Obviously opinions vary, so I have to weigh everything. But it does make my already confused mind much more confused. Pam

Her primary symptom is obsessive worry about everythng she has ever said or done. There are many other symptoms (doesn't want me to leave her room at night, nightmares, anxiety, very concerned about cleanliness and order and germs, and other things) but that is the main one. She only does these things during PANDAS attacks. I don't mean normal worry. It is extreme worry that tortures her. She doesn't like to go anywhere or do anything, because when she returns, the worry consumes her. She worries about things she said 5 years ago. When I gave the burst, they were pretty severe. Not the most severe she's ever had, but still very severe. Pam