norcalmom

Hi EAMom - I dunno anything about the cholesterol, but in reading thru this thread saw that her IgG mycoP was positive. There is a reason there is a cap on the normal VS positive IgG- it means that it is high enough that you need to track it -to see if it is rising. Vast majority of doctors are misinformed on this - so you should test her in a few months. If its rising, it's an active Myco P infection - a chronic one. If you do some digging, you will see that the test manufacturers and a number of paper recommend re-testing if IgM is neg, but IgG is positive - and I'd think that's esspecially true if you don't have any awareness of your DD having had a mycoplasmal infection. My son had his continue to rise while on full does Azith. People who have MycoP for long periods of time (chronic) usually do not make the IgM...which is why they even test the IgG. Also, people that have it more than once - will often not make the IgM. Good luck with everything!

DS went to snowboarding camp (an overnight camp) and loved it so much he asked to stay another week - which he initially didn't want to sign up for because he thought it would be too long away from home. We allowed him to stay, and thoroughly enjoyed the pandas-free household for two weeks, and the fact that he was having "the best time of his entire life"...now he's back and its over, and he can't seem to get over his sadness that it has ended. He's been crying on and off for 3 days - often in his closest (a regression thing I've not seen in a while). He's always had some mental inflexibility as a symptom, but this is beyond that. He's stuck on the fact that its over. (along with begging us to send him to a boarding school where he can snowboard - like a couple of the kids he met at this camp). Where he would be away from me and the fact that seeing me swallow (saliva, food, coughing, sniffing..- all set him OFF). and that makes life difficult - stuff like 4th of July parties, anything social is pretty much out of the question for us to do together. And miserable for him. His freedom from it for two weeks has made him realize how miserable his real life it. We thought he was just over tired, and gave him a couple days to catch up on sleep...but it hasn't gotten any better. Of COURSE it get more complicated - since its a holiday week, and my husband and son leave for a trip to Europe on the 5th....I'm freaking out. And stressed beyond belief. Any advice appreciated....

So - happy for you!!!!!!! Congratulations! Do you think she would have been 100 with out the intenstive CBT? Just wondering how much you feel it contributed to her recovery. Are you a patient of Dr B?

wow wow wowow!! So happy to hear your son is getting better after all these years. And Fixit - thanks for the great probiotic article!

Most pandas kids have high Dopamine - I forget which its either D1 or D2 - Cunningham tests for these two along with the Cam K II, and two anti-neuronals (Anti-lysoganglioside and Anti-tublin). These levels fluctuate. During exacerbation one or more of them is usually very very high, and post IVIG - return to normal or close to normal. So if you are testing for Dopamine (and others) realize it goes up and down. This is why I decided to have DS do his Cunningham test when he was at baseline, with almost no symptoms. I didn't want to treat something that was only there when in exacerbation. Although, Cunningham's lab recommended doing the tests when in exacerbation - because they said more likely to be higher and show abnormalities. Thanks for this post and all the info to those that have contributed. I may have DS tested - since it may contribute to his general health, and immune health. Anything I can do to help keep him from illness (which in his case may =exacerbation) and help his body overcome his chronic mycoplasma, I'm willing to investigate. I guess its time to see if he has the MTHFR.

Good one! Must send to my sister - who had the bullseye and everything - and was mis diagnosed, then under medicated, and third doctor was a charm (but it took 9 months to get to him!). AND - that was in Rhode Island, about 30 minutes from Lyme CT!!!

I'd get the eval when she's at the worst, that way, you can see what functions are specifically impacted. And, the provisions will be in place if and when your child needs them. Otherwise - if she does well the school may disregard your input that she needs assistance in an area - and refer to the testing - which was done during a time that your child's brain may have been functioning without the impairment of a pandas exacerbation (witch can last weeks, and often times the baseline does not return). We had DS evaluated, it was extremely enlightening. He also got in the bottom 2% on two test that measure ability to performa spatial tasks at the same time as fine motor (forget name, but sounds like it could have been the complex figure test, or very similar to the complex figure test EAMom mentions above). So they recommend an alpha smart - which I would never have guessed - but of course my son was too old and too "cool" to use it. But I least I know why he has issues with math - copying stuff from the board while using the part of the brain that performs spatial function is impossible for him (or was at the time). We though he was too lazy to write anything down in down in math- because he could do math in his head that I could not - but as it got more complex, he was beginning to make little error, effecting the final answer (not to mention atht he was usually getting only 50% on correct answers for "not showing his work" - and then in trouble with me for the same thing because I thought he was being lazy! There were other recommendations too. We didn't use the results for an IEP or 504plan, but I'm glad we had the test done when we did should I need to use it, but mostly for my own understanding of what was going on. One part of the brain can be so significantly impacted and the other parts function fine (or better than fine because they learn to compensate so well). You just don't know what the testing may turn up.

I have nothing of value to add, but had to share with someone that I cannot read this acronym without filling in a few vowels...

I would put on advil for a few days, and any other anit-inflamatory measures you have (diet/supplements) . Reduce the inflamation in BBB in effort to keep those increased autoanibodies out of the brain.

He is hosting the upcoming PANDAS symposium in Irvine - his name is the on the RSVP - not the list of presenters, but can we assume that if he is hosting it, he'll be presenting? Here is the flyer - Swedo, Cunningham, Murphy, Triffilleti and Hornig are all confirmed speakers. http://pandasnetwork.org/wp-content/uploads/2012/05/Autoimmune-Diseases-of-the-Nervous-System-copy.jpg I'm going - anyone else? I'm going to email him (since that looks like how you rsvp for this thing) and will ask if he is presenting.

I'm also very interested in this. I think he was one of the presenters on the list for the recent pandas symposium in San Francisco. Did anyone see either of the presentations ? Please let us know!

Its interesting that no one on the pandas board has responded, but several of Lyme parents see this behavior. For those of you that have it - my heart goes out - its usually directed towards the person they are closest to. I used to get growled at too...now I get sworn at (teenager). He doesn't actually say the words - he mouths them at me, but having all this anger directed at you from the person that you have given your life up to help, is very maddening, and very scary as he gets bigger and bigger.. The nice thing about that video is - it was sent to me by a friend. And because the behavior has a word, and its a condition that people have and cannot help, she understands better. Previously she has said that we give him too much control, and that he needs more "structure" and limits - and to talk to a therapist. All well meaning, but she just didn't understand. After seeing the video - she said she now gets it! She expressed sympathy for him and admired his control (compared to kids in video) and ability to work through it. Previously I think she just thought we spoiled him and bent to his will too easily.

Victory - is sweet! - thank you for sharing. I'm so happy for you both. I can see how hard its been to get to where you are. Even though its just a stupid test - and I'm sure you've told yourself over the years it meant nothing and was the least of your worries. It just feels good to see a measurement like that validating all work you both put in. Tell your daughter I think your daughter is right. You were both meant to go through this - so you could inspire others to be persistent, and pave the way for other "non-standard" pandas cases like yours. Tell her -thank you.

Don't mean to hijack this thread - but saw Philamon's comment on the misophonia - I made post about misophonia on the pandas board yesterday - my son has this as on of his many pandas symptoms (most gone now - knock on wood), and I know I've read other posts where parents talk about rage set off by words or sounds. I'm looking for others that may see this symptom in their kids with pandas. If "tourettes" or "OCD" can be your only symptom of strep or lyme ( or pandas)- maybe some of these kids with misophonia could be helped with pandas and lyme treatments. Onset is same age as pandas...

I didn't read this whole post. Sorry - but the answer is you need to get blood tests - and you probably need to get another blood test in a few months to see if the IgG is going up or down. Could it be a tic - yes, but you need to rule it out before you assume its a tic. With a pandas kid - in my opinion - the IgM means nothing. I would assume that if mycoP is an issue for you it is chronic mycoP or recurrent mycoP and in most of those cases the IgM will be negative. You need to track the IgG over time. The doctors will try to talk you out of that. Don't listen. If the IgG goes up you know you have. Same or decline - you probably don't have it. My son - had the persistent dry cough. Its longer than a week. More like 3 weeks. Weird sounding (not quite croup, but kinda)- no strep. Lungs clear. He had this a couple times early in our pandas diagnosis. It wasn't that bad - no fever, and I was taking him in constantly to check for strep (alway negative) and his lungs were always clear. This is way before we found out he had it. You don't need the cough to have a chronic myco infection. There are literally no symptoms of typical pneumonia. I just recalled that he had a sort of long lasting cough, a couple times over the years, that I had checked when he had them. His blood test for mycoP was a year later - when he had no cough, and no classic pneumonia symptoms. Pandas IS a symptom. Just like with strep - all pandas kids should get tested for it (twice!) to rule it out. Its a known cause - its a quick and simple blood test - just push for it and get it!! You aren't looking for typical mycoplasma. You're looking for chronic mycoplasma - and they are different. (but of course you could have the typical version too - but not if lungs are clear) Lyme doctors are used to mycoP - because it is a common co-infection with Lyme for some reason (ticks carry it, and because the Lyme messes with you immune system making it unable to clear it). So, if your ped doesn't understand it or you have any resistance - I'd go to a LLMD. And if you come up positive at the pediatricians - I'd then head to the LLMD - because they know the antibitocs to treat it, and the Ped will most likely give you treatment for typical pneumonia - not chronioc mycoplasma. Hope that helps!

Anyone who's kid is triggered by noises, especially noises of the mouth, and especially noises made by people closest to them - NEEDS to watch this. A friend of mine with insomnia saw it the other night when watcher her TIVO and she sent ti to me. My son absolutely has this condition as a symptom of his pandas. The doctors we know have said its a form of OCD (which never fit 100%...I didn't really care because to me its all just symptoms of pandas...but watching this video it is soooo spot on with virtually everything! When you here the recording they made of this girls rage - I'm like - oh I've heard that before! I wonder how many of these people - have pandas as an underlying cause. Because I can say - with 100 percent certainy - that this was DS's first symptom. A couple weeks later all the other symptoms piled on, and the fact that he had so many led us to pandas (esspecially the tics)...and I also know that after IVIG - this symptom almost went away (but it is the last one hanging on - and he still struggles with it - but we are still clearing infections, so he's much much better). http://abcnews.go.com/2020/video/taylor-misophonia-medical-mystery-teen-sound-rage-2020-16383729 Who else's pandas kid has this disorder (symptom) Please chime in - I'm going to be contacting the doctor as well as the pandas researchers to let them know - there is a connection. I know there is for my son, and I think there may be more kids out there that have this because of pandas. The label - is just like all the others - "here is a disorder that we will give a name to, but we don't know what causes it, or how to cure it". Just like the long list of things my son had at the worst times of his exacerbations - tourettes, eurenisis, insomnia, anxiety, ADD, dysgraphia, obsessions.... Maybe some of these people can be helped. I just read the post and realized a typo in the title - it is spelled - misophonia

This came up for my son last year - and he had had IVIG a few months prior - so our immunologist wrote a letter that said there was no need for vaccination because the IVIG procedure granted my son the immune protection from the virus - and another vaccine would be redundant. He didn't mention how long the IVIG protection lasts v a vaccine - and the school didn't ask -so if you had IVIG in recent months, that is another route to go. DS had tetnus checked at some point in "regualr" testing - and he made titer. Never checked for pertussis.

Not yet - he'g gotten much better - no more pandas exacerbations - but some mood swings, and one OCD thing that goes up and down (dealing with a weird infection of his gums we don't know what it is - and I think that is why he had a slight downturn fast few weeks). But - he would have been heading for another IVIG had we not found this and treated with different antibiotic, I'm pretty confident in that statemen. After IVIG 1 - he did great until he caught a cold, minor exacerbation, and then another cold, worse exacerbation...and then slow decline. He never got as bad as before IVIG - but I didn't wait too long to get him another IVIG (7 mos)...After that IVIG - similar - and he didn't have huge gains he had after first IVIG (granted - not as sick)...but was able to stop this pattern with the antibiotic switch. He did 13 weeks on Doxy (Doryx) and he just started Minocyline back up after a 2 week break. 9 months -or more - is typical to get well from this. There's something like 70% relapse rate for those that only do 12 weeks of antibiotics, this for mycolplasma fermentans - which is a strain of mycpP - there are about 6 kinds - but that was the study I read. Fermentans is more common type in Europe, and in Gulf War Syndrome (which was discovered to actually be systemic MycoP a while back)..theory is that these soldiers got it because either the strain was weaponized - or more likely - that these soldiers got 20 or so innoculations and then were exposed to it, and the innoculations messed up their immune system. Those sent over without innoculations did not get the disease at any higher rate than normal. MycoP has no cell wall and is extremely small. So it can cross the blood brain barrier, unlike most other antigens.

I'm willing to bet that your son has a chronic MycoP infection. Five times the normal range is very high, esspecailly if they didn't have pneumonia recently. I've made alot of posts on this - but your IgM for mycpoP is usually only active at the beginning of infection - if the infection becomes chronic - or systemic - or if they have had it more than once or twice - then the IgM will usually decrease just like it would if you had gotten better. My theory with my son is that when he was 6 he never fully recoved from pneumonia - which was dx'd and treated with regular course of antibiotics - and it became systemic. Do you remember your child ever having a long last dry cough - after a cold, it just hung on for 2-3 weeks longer than the rest of the cold symptoms? This is atypical pneumonia - and most docs are only looking for symptoms of typical pneumonia (if lungs are clear - they think kid is clear). He became full blow pandas at age 9...but in those 3 years he had 2 or 3 weird "phases" he went through - which I probably didn't recognize as pandas. That being said, most people will recover from this type of pneumonia without any treatment, but for some reason my son could did not. His immune system couldn't kick it, due to whatever reason (possibly Lyme..possibly "weak"immune system) and that is what triggered his pandas (he had peri-anal strep just prior to his pandas explosion at age 9 - but never had a strep throat). Azith was not a good treatment for my son. While it seemed good at the beginning of pandas (this before we knew about mycoP) he got better for a little while, and then the Azith didn't seem to be doing anything (except making me fell better - protecting him from strep - as well as probably made his a little better due to anti-inflamatioy properties). Doxycycline and Minocycline (which belong to the macrolide antibiotics class) are the recommended treatment. Azith is sometimes used for mycoP - but I think that more commonly used for the "typical" MycoP (community acquired pneumonia) than the atypical systemic / chronic mycoplasma. google "chronic systemic mycoplasma treatment" for more information. And confirm by having his IgG tested again - to see if it went up, down or stable. It may go down a little with Azith - and then go back up if Azith does not wipe it out (and it may not - which was our case - my son was on it for 2 years full dose and his IgG for mycoP went from 2450 to over 3100 -normal under 300) in a few months - that was our confirmation that he had MycoP and switched to Doxycycline.

Thanks SF Mom ! He's not exacerbating....maybe just a bit grumpy...so weather its a cold or herx - he's doing better than when we first started on the doryx 4 months ago - so its good. Hope you are all doing well in the SF Mom household!

That is correct. He only makes one. It is not that uncommon - and probably means nothing for you - but if your child is getting sick a lot - then it could mean something. Ask your immunologist about other tests, but I would not do the "challenge" where they vaccinate you to see if you will have a response. Has you child ever had pneumonia? Have you had his Mycoplasma titers checked?

Hi all, My son had a strange gum infection that prompted me to take him off his high does of minocycline and his A-myco for a couple weeks. He just started back up - I did 2 days of mino only at half does, and then upped it to full dose. Didn't start the A-myco back up yet. on second day of full dose started to complain of a headache (for him that would be normal reaction to starting antibitotic) but he is also complaining of a sore throat, and a bit of stomach ache. He has no signs of strep (never gotten a strep throat that I know of - beleive me we have swabbed him ALOT)...And I'm wondering if I should get him swabbed, or if this could be a herx, letting a couple more days go by.... Thanks - I think others have said "flu-like symptoms" are typical herx - but the only thing that DS every had was a headache when we switched his antibiotics before. He also started back up on Mino - before we took the break he was on Doxy, so different antibitoc (he may ahve gotten a few does of the Mino before I stopped everyting) Does - "flu-like" include sore throat?

Similar to my son's - just boarder line low except for one subclass. The immunologists don't consider this low - our docs charts had much larger "normal" ranges than the test result form, and although my son was about 200 points below normal overall IgG - it would have had to have been about 400 below for them to be concerned about it. And I'm pretty sure the treatment is IVIG, but low dose and on-going. You may want to add some iumme support supplements like D3 if you don't do this already. I think it helped my DS get through almost a year without a cold (ironically, has one now as I type this - but first in one year since his second HDIVIG - but I think its mostly the vit D3 that's keeping our entire house more healthy - but we aren't riddled with colds or other respiratory illnesses - it was just that when he got a cold it would set off exacerbation so we measured his D3, saw it low, and I began supplements for whole family (mine low too) about 18 months ago - its easy because they are tasteless drops - and you can just put a drop on cereal in the morn and you would never know its there. Did you have your pneumococcal titers measured ? pandas kids also low in that area - my son only made about 5 titers, and only had one in the normal range - out of 14. This is more alarming to them, and they will often ask you to re-vaccinate and do the blood draw again (heck No!) and if you refuse there are some specialized tests that look at B-cells that can get the same info. Long story short - I think my DS's poor performance on these tests is why he got HD IVIG covered the second time (better immunoloist) and we didn't get insurance to cover the first time (pandas doc). Both were very very helpful to DS.

good luck coco - keep us posted. I would go the iv route and by pass the gut too - if I though DS would do it!