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Thank you for your quick replies. Yes, its been two years since bloodwork (other than thyroid levels). I know there are other things to test for but I am unsure as to how to get a doctor to order these tests or what battery to ask for? You both mention things for which he has NOT been tested. At age 5 he had only basic allergy testing that showed all negative but I have always thought he was an allergy child despite his results. I have him on lactose free milk as we had issues with bloating and such when he was younger et cetera... Would you suggest I call Dr. T again (we've not talked to him since 2011) to arrange for a proper and thorough work up? I am not sure where to turn for help in my area. Of the Dr.s listed on this site, they are either not practicing any loner or have waiting lists a mile long.

Hi All, Quick background: ds dx'd PANDAS (in retrospect PANS) by Dr. T several years ago. No identifiable triggers noted at the time. Strep, mycoplama despite checking at various times always negative. Lyme negative by CDC, but id have one postitive band IgM 23 and one Ig G 41 during one flare via western blot. Always responded to Motrin and/or Azith. Was on Azith for about a 9 months and weaned successfully. Treated intermittent blips with anti-inflammation measures successfully and had usually 1-2 major flares a year. We were okay. Now age 12.5 and for the last 3 months like clockwork he has had a viral illness and subsequent one week long terrible OCD, moodiness, through the roof insomnia... It eases after about 7 days each time. The flare is so great that he was rx'd Klonopin out of desperation but we think that made him more moody, aggressive, forgetful, drugged. Melatonin seems to help some. He even took Ambien during the worst, worst times. Most drugs in general seem to hype him up and make him worse... In his life, Zoloft, Benadryl, Gabapentin... have all made him hype and moody or more anxious. Magnesium and motrin seem to always help some though the degree is questionable lately. Azith did always in the past - but last month it did not help at all - so we switched to Augmentin which is what he has been on since mid October. The last two flares October and November, we have noted additional physical symptoms: fiery red cheeks and ears. They bother him so much. He also has heat flashes all day long, knee pain and leg pain, problems looking at bright light (computer or tv screen). His eyes hurt and are tearing and he says his skin doesnt feel right. We don't note anything different in the sense of potential allergies. I am currently STILL trying to get in with an LLMD to investigate lyme but i am having a hard time STILL finding anyone who will help us. The closest LLMD is three hours away with months long waiting list. We do have an understanding psych but she is fairly baffled. We have appt. to see endo in a few weeks (he is hypothyroid but stable supposedly on minimal synthroid). Do I seek neuro? immunologist? first to make sure we are not missing something? We are near Duke and UNC if that helps though I've been told both are non PANS/PANDAS believers. We've been living on the edge since September, bracing month to month, and I just am not sure which direction to turn. My husband now wants to turn full tilt toward more psych meds but my experience tells me that he won't respond well. At least we haven't had a positive response yet... Advice?

I should add that the pupils dilate in the evening several hours before Melatonin. And the headache and vision problem is all day.

Many thanks for the replies. This forum is such a valuable community! Now that he is off Valerian, Ambien and Klonopin he is somewhat more manageable during the day. The rage is gone and he is able to put on a brave face in front of others. He does still obsess over tiny hairs everywhere and dust being stuck to his skin. In addition he is generally still in over drive. He is able to sleep with Melatonin and me in the room. Though it is not without struggle. He begs to be knocked out. His pupils dilate every evening as he anticipates the dread of night. Honestly the only thing that helps him is Motrin. We have switched him from Azith to Augmentin to see if that helps. We are considering a steroid burst if the rage returns or if he becomes dysfunctional again. I agree that we need to look into alternative treatments and I do think we need to search for more underlying infections as well. Rowing Mom, Dr. T said "no lyme" as DS had only one band present on both IgG P41 and IgM P23 ??? I admit that I am NOT lyme literate. ??? I also grow increasingly concerned that his thryoid is a bigger player than I thought. He is still on synthroid and although his latest labs are WNL, I just can't help but wonder if there is more to it. Of course that thyroid issue is still my best card when talking to doctors who do not believe in the autoimmune nature of PANS. Lastly, he is complaining that "screens" cause headaches and vision problems (when in the past it was hard to tear him away from a screen). And both is legs are sore all the time limiting his ability to do much of anything physical. Any thoughts? Thank you to everyone!

Yes back on Azith. I have always thought Azith response was primarily helpful purely for its anti-inflammatory properties. But yes perhaps I need to try a different agent. He does still have the tail end of a major cold - now a cough in his chest. Though he has a long history with strep infections, we've never been able to document high titers. And his testing for most other culprits via Dr. T have been negative. He does have the fairly common G subclass 2 immune deficiency so he has frequent infections. His nasal turbinates always seems swollen but no doctor ever seems to want to do anything other than prescribe nasal inhalers for him. We are in NC-- if anyone knows a PANS MD. As said, our new psych is a believer but doesnt know much what to do about it. And because we had been sailing - relatively - managing episodes we have not pushed any further. This time just feels different though. All his other flares have been compulsion based with just right OCD, hyperactivity and anxiety. This just seems different in the way it presented and the way he is acting. He has no compulsions but does feel as if his hair is falling out and dust is stuck to his body. The separation anxiety is full tilt. The brain fog (which I have seen often before) is not lifting. The sleep issue is huge. He is coming unglued by the second.

Have been dealing with this in retrospect since age 5. Diagnosed by Dr. T at age 10. My son is now 12 1/2. We never identified a trigger but he had clear episodes of compulsions, OCD and anxiety about twice a year-- the worst being in the spring. Azith helped (as did motrin).. During one flare his ferritin plummeted and his TSH was 7. With synthroid those values stabilized. We had been doing very well - knew the animal-- knew what to do. We had been symptom free for 8 months. Five weeks ago, my son had a hard time falling asleep. It freaked him out and he stayed up until 3-- not wanting to leave my side. Anxiety through the roof but it was not the PANDAS stare that I had been familiar with-- despite occurring a few days after a cold. He was just very concerned about upcoming tests et cetera. The episode spiraled though, and he ended up with short term Klonopin and Melatonin as Rx'd by pediatrician. This helped the sleep but made him wired and weird during the day. He missed several days of school and then lucky for us -- 2 week vacation. It was good timing. He got better after weaning from the benzo and within 2 weeks he was fine (and of course I had also started him on antibiotics this time). Went back to school without issue for 10 days. Went to a very stimulating party and he had trouble sleeping again afterward. This triggered the entire scenario again. He also developed bronchitis one day following the first insomnia night. Klonopin made things worse. Rage, pupils dilated. We tried valerian and melatonin. We resorted to a tiny dose of ambien. I had thought "...if I could get get him thru the week... we'll be fine.." He's not fine. Severe separation anxiety. Severe moodiness and brain fog and now wetting himself. Now it's looking like the PANS I remember. But the nights are the worst. He won't sleep but he desperately wants too. I don't know if the melatonin and valerian are making him worse? I don't what is up or down anymore. I don't know right from left. I myself haven't slept in a week. I may have to take him to the hospital, because I don't know what to do. But I know they will diagnose him with something like bipolar and pump him full of drugs. I will lose my son. We have a new psychiatrist that is a PANS believer but she is out of town on vacation. I have him on antibiotics and motrin. I don't know what else to do. I am so very scared.

Hi There, My son is 11. Will be 12 in March. He's in 6th grade. Had thought about using religious exemption but wanted to see if there was a way to get medical exemption first. I am surprised that there is no titer for pertussis.

I have read in other posts about titres as a way of declining boosters. In our state it is only religious and medical waivers allowed. My son has documented immunity to diptheria and tetanus. Doctors say no way to demonstrate immunity to pertussis and considering recent "outbreaks," he needs vaccine. No way to separate the vaccine and deliver just pertussis so he would need full Dtap. Son has been flare free since late spring. Please advise on which route to take. Do we roll the dice?

Woops-- meant to post in PANDAS

I have read in other posts about titres as a way of declining boosters. In our state it is only religious and medical waivers allowed. My son has documented immunity to diptheria and tetanus. Doctors say no way to demonstrate immunity to pertussis and considering recent "outbreaks," he needs vaccine. No way to separate the vaccine and deliver just pertussis so he would need full Dtap. Son has been flare free since late spring. Please advise on which route to take. Do we roll the dice?

I am just curious about this as most of the public awareness campaigns show handwriting changes before exacerbation and after with dramatic changes. I definitely see this in my ds11 during a flare but it is now graying over time. We did not know he had PANDAS/PANS until age 10 and while I do see changes in handwriting during an exacerbation-- his overall handwriting/fine motor skills have also seemed to remain an a generally lower level than in previous years. Age 8 and below, he was drawing detailed pictures and had very nice penmanship. Now, his drawings are far less detailed and his overall ability to cut with scissors, color a picture or write legibly are sub par! Not that an 11 year old has to cut and color that often-- but his penmanship is pretty dismal too. In a flare-- his fine motor skills are AWFUL!!!--. But while not in a flare-- they're still bad. So I guess I wonder this means he's always mildly affected. We have not treated with IVIG yet. Does this steady decline indicate that he is always dealing with some level of inflammation? Or is it that he's developed bad habits that are just now staying with him.

I recently sent the bottom two links to our teachers. Am considering sending the video that is on facebook too-- sent by 'fightingmom" on this thread below: http://www.latitudes.org/forums/index.php?showtopic=17212 http://www.ocfoundation.org/PANDAS/ Also the white paper is not a hard read if they want to understand how this diagnosis has developed.

I am no expert but in my opinion there can be multiple triggers. This is why they are adding PANS as a larger umbrella. The AS in PANDAS stands for "associated with strep." PANS is broader definition acknowledging there are several other triggers. Even allergies can be suspect. Also in my opinion, our kids are vulnerable any time their immune system is taxed. So-- all systems haywire when overloaded. Antibiotics may or may not be useful in this case. I believe they could be used-- but only for their anti-inflammatory properties-- not for ridding the trigger. If I were you I'd try the most basic thing first. Motrin! For some kids, my ds included, this has an amazing affect. I don't know your history or whether or not you've tried it but it's worth a shot. Also I don't know if you've posted prior but--If you think you have a possible diagnosis you would probably want to get in touch with a PANS/PANDAS specialist. They may assist you in riding this out-- long term.

This is completely off the wall but we actually give zantac in a pinch. It's for the stomach of course but has anti allergen properties along the H2 receptor. My ds flares with regular H1 blocking meds like benadryl, claritin, allegra.

This is completely off the wall but we actually give zantac in a pinch. It's for the stomach of course but has anti allergen properties along the H2 receptor. My ds flares with regular H1 blocking meds like benadryl, claritin, allegra.

And here is Buster's very good explanation about ASO. http://www.latitudes.org/forums/index.php?showtopic=3756&st=0#entry29305

Hi There, I might be wrong but it's my understanding that different labs can have different ranges of normal. Were the two ASO's drawn at the same lab? If not, it could just be a lab difference that you are seeing. But yes, there is also the possibility that the hospital did indeed mess up-- would not be the first time. Am glad you are on a good path now.

There is a urine/blood test that can look for markers for intestinal yeast, intestinal bacteria overgrowth et cetera. A friend of a friend recommended it to target the probiotic strains for maximal protection. It may also tell you if you need an anti-fungal agent. I was thinking a general broad sort of probiotic would be fine but wasn't sure what others did. I don't know how much the test would be or really if it's as useful as my friend implied. I also wasn't sure what strains/brands people were using for the general- more broad approach-- hence this poll of sorts.

Just curious. And I can never get my search function to work on this forum. Which probiotic do you use and how often? And did you do testing to determine the appropriate one?

Ah, I was hoping you would answer your own question! Thanks so much for sharing your perspective as it has evolved over the years. My head swims as well. It is a shame that one must fight the establishment merely to get some clarity on the issue. Why couldn't all psychiatric disorders have root in the autoimmune area? PANS/PANDAS may be really just the very tip of some large iceberg. I understand why MD's might shy away and continue to "do what they know." But as a person based in science I would think they would get very excited about the possibilities. True, psych and general practice would have to merge. Isn't that why so many of us turn to holistic health? Part of the downfall of modern medicine is "the specialist." Very rare do you get someone to look at you as a whole person. It's certainly possible that "regular OCD" could very well be untreated PANS-- perhaps not caught early enough and thus treatment is far more complicated. The typical wax and wane nature of OCD becomes more blurred over time and thus its more of a gentle in and out than a true treatable exacerbation. But I am willing to bet that if you were able to get to the histories-- there would be a dramatic onset at some point in their life. Thanks again for your words. I will keep this pinned as you answered your own question so beautifully!

Was recently going back in time and found a post from Nancy that I know has been discussed before but I still have trouble wrapping my mind around this. Though we have strep as a trigger there are times that my ds11 will flare for other reasons I think-- most notably allergies I'm guessing. So while I know PANS encompasses all such triggers, how is this pattern really any different from "regular OCD." Could it be that all OCD is PANS? He does go from 0-60 when in an exacerbation and he does respond to antibiotics. Is that the difference? http://www.latitudes.org/forums/index.php?showtopic=7485

Dr. T. warned about this back in our very first phone consult. I also remember visiting this Dr. W's website and all his videos are fairly well done. I particularly liked his website that breaks down the supplements used for autism. As so many of have discovered, our kids parallel in their response. Thanks Linda for reminding me about his site. He addresses, yeast and gut integrity...

Sorry for all the questions. We are all so eager for similar results. Of course what works for one might not be right for another but its so interesting to research all the leads. My ds multivit contains 400 mcg. Was yours in addition to some found in your multivit? Or did your multivit not have any?

Our pediatrician has been on board --with the main care managed by Dr. T via email/phone. We've been able to manage for a good long time. Recent flare (normal spring time issue) however is proving more difficult to manage thus this question below: Wanting to pursue a bit more into the diet/allergy/gut end of things. I've checked the pinned thread for doctors in NC. Any new ones pop up in the area recently? We live near Raleigh. Thx!

I'm not a lab person either -- you may want to post under a different heading for more response. My ds11 is also IgG deficient borderline-- though signif. in subclass 2 and 3-- which predisposes him to infections. Dr. T said very common with PANS/PANDAS. Did you get a chance to discuss histamine connection?