JuliaFaith

Your son sounds similar to mine. Does he feel 'normal' if not around others? My son has not felt 'back to normal' for 20 months of treatment [really for over 2 yrs. now when this started] (and sometimes worse). Two years ago we started an on-line school with him because he was just not well enough to attend public school. Last year, his dr. said he should be ready to return to school so we started him in Jr. High and he did not get sick, just kept feeling worse and taking longer to feel back to baseline. After 1 month, I decided to do the on-line school again (not an easy decision because it is challenging). He still had not had a breakthrough with his health, just a slow healing. Then about 2 months ago we found and removed, what we hope is, the last of the mold in our home (attic). Within 2 weeks (along with Refampin and other new supps) he actually admitted to "starting to feel better." During this last 21 months he has caught a cold and had a stomach flu and recuperated just like anyone else (except it was on top of not feeling great as well). Asked doctor when we would know that his PANDAS was getting better. She said when he feels good again. So with this 'feeling better' we were very hopeful that he was on his way. During this time of feeling better, he had a bad bike accident (concussion/broken arm etc.) and had 2 dental appts. for the first time in 2 yrs. Then he was around a lot of people sight-seeing with relatives. I was not sure of his reaction, but he seemed to do ok. Then we decided to go camping and on the way his PANDAS came out. Afterwards, noticed that my dh had put a moldy life preserver in back of car! A lung infection (which I believe is his trigger) ensued and he was back to his first 'PANDAS' episode in all these months. I was not prepared like I had been at the start of this with abx ready to go. We were out of town and he was already on Rifampin so did not know what to do. His dr. took him off this and set up an appt. 3 days later. Ibu/Benedryl did not help much during those days and it made his PANDAS flare in ways I had not seen before. His dr. says he cannot go back to school right now (had been planning on starting high school part time). Dr. did say that because his health is pretty good otherwise, that healing should be quicker than in the past. Still not sure how he will react when around others. Thinking now that we may try 1/2-time at mid-term if improvement continues after this flair is over. Trying to problem-solve all of this, in addition to figuring out school, is very difficult so hopefully this has given you some information that you can use in your decision-making. Before flair he was on: detox/thyroid-hormone meds/probiotics/rifampin (ear infection)/Vit. D/A/Chia. Now during flair he is still on the above plus---Amox (3 weeks); Azith (6 mos?); TravaCor (Neuro Support); Breathe Free (lung support); Ketotifen (stomache support); Itraconazle (fungal-tested high for mold again); Transfer Factor multi-immune. Also going to do full-blown parasite protocol again when we get all meds in just like we did in the beginning. This dr. believes there is a connection between parasites and PANDAS. Best wishes on treatment/healing. Julia

My son has also had high lymphs throughout all of this. On my notes it says "systemic toxicity" as the cause. My son is still detoxing, detoxing, detoxing... So good to hear your son is sleeping by himself. We were doing well in that area until this recent flair. Thanks for the song.

One you may look at is "Matrix Minerals" from BioPure. Liquid to add to juice/water. My son took this while on an anti-viral med. because it was know to deplete minerals. Have you done the 'Docters Data' hair test to see if vitamins are being absorbed by your child (also measures heavy metals being expelled thru the hair)?

Someone on this forum recently had their dr. tell them that 'mold stays in your body for a long time and is difficult to get rid of". So my son is showing high MOld again and dr. does not know if it is from a recent exposure or past. Now Dr. Shoemaker, author of "Surviving Mold" attributes the reaction to mold as genetic and an inflammatory reaction to the biotoxins. He believes 25% of the population has a genetic predisposition to an inflammatory reaction to mold above the rest of the population. Mold is not good for anyone, however, certain genetic types it can be very bad. This book just came out in 2010 so the information is very new and some dr. are just beginning to take a closer look at mold. He believes that mold illness can creates symptoms similar to lyme. Have you done any of his recommended blood work? My dh did the TGF-beta 1 test for inflammation and found his 'higher than the dr. had every seen.' Just another lovely surprise! High amounts of allergies may mean that there is some high inflammation going on. Have you done an ERMI test on your house? We have done two - first one was 13.7 (recommend '2' for chronically ill) and our 2nd was '8.' That is why we had a remediator come in and do some more sampling. Somewhere in reading about mold there was a test done with mold in two petri dishes. The one subjected to higher EMF (Electrical Magnetic Fields) grew several times faster. We actually bought a bunch of EMF stetzer filters to keep the EMF's down a bit. We were also recommended to put up EMF curtains and even paint with EMF paint. Have not done these things yet. It only takes 2 days for mold to grow in ideal conditions! Did hear recently that new houses can be worse than old houses for mold because of how they are built enclosed in plastic now. In our area, they build houses in the pouring rain and then enclose in plastic! Getting the vents cleaned can only help your situation if it has been more than 3 yrs. since it has been done. You may want to be outside during the cleaning. Our vent-cleaning guy had a hepa filter on his machine and I spoke with him on the phone before hiring him. Another guy I had several years ago, silver-taped around inside of every vent inside the house so that the suction was really good and now I realize it probably kept stuff out of the walls as well. This new guy did not do this. Anyway, what I am trying to say is that it is great that you are exploring this and it may be a big key to healing even if another thing on your plate drives you a little crazier! Good luck.

So glad you have found some answers as they can be hard to find. Just read about this the other day. Some timely information about how inflammation in the body can cause psychiatrict symptoms was on the surviving mold site the other day, which made me think more about this kind of thing. I hope treatment will help your daughter (and the rest of the family) get through all of this a little bit easier. Huggs!

Tpotter, we have had to deal with a lot of mold issues in our current home over the past 13 years and with the continuing high humidity in the 1/2 basement it is continuing to be an issue. The air outside is so moist that keeping the humidity down inside is a challenge especially with underground springs flowing down towards our house. After just spending 5g on our attic we found mold growing in the basement bathroom again because my husband installed a shower incorrectly. My son just went to dr. yesterday and she said he is showing high mold so put him on Sporanox (anti-fungal) again. He is also in the middle of a flair we think from that and a lot of other things that have caused inflammation in his body (i.e., concussion, broken arm, dental work...). Anyway, we had a mold remediator come in to check air quality (after doing ERMI) to pinpoint continuing mold problem. He found the attic was really high for mold so sealed it, took out old insulation, and had new insulation put in. We left the house when the initial cleaning and removing insulation was done, but my older son was at home and told me what they had done. They had sealed the area around where the moldy insulation was removed, but after that, a portion of drywall that 'had some mold' around the skylight was removed without any barriers put up! Never saw the drywall and how much mold was there but was shocked that they had not taken more precautions. So you never know what you will be getting. One thing I wish I would have done was call past customers and talk to them. I did google to see if anyone had posted any neg. info. about their services. I would be hesitant to have a product used with 'water, alcohol, & fragrance'! I.e, You do not need more water...alcohol is not recommended for mold remediation in anything I have read...there is a lot written on the unhealthy side effects of fragrance. Just my thoughts. When I had vents cleaned this last time, the guy said he had a 'mold-killer' that he could put in the ducts but that it was a bit toxic, so I did not have it done. Here is info. on remediation from the surviving mold website: http://www.survivingmold.com/legal-resources/environmental Best wishes on the mold remediation. It could well be worth it. Two weeks after we had attic done, my son, for the first time in over 2 1/2 yrs. actually admitted to starting to feel better. He was on other things so not sure if that was the deal breaker but starting to think so.

Your situation sounds familiar. My Ds14 tried to return to public school last year and his flairs just kept getting longer and longer. When the last one was for a week and he had only been in school for a month, I transferred him back to his on-line school. He was not on any abx at the time. We were going to try starting with a 1/2 day this year at the high school but he just came down with an illness/flair so not sure if that is going to be possible in a few weeks when his school starts. He is on abx this time so maybe it will work...? His flair has never really totally went away though (flu-like symptoms). It was just beginning to for the first time in 2 yrs., 2 months ago until this illness hit. I did sign him up for on-line just in case we had to go that way because it takes an entire month to sign up and get books sent which puts him behind for the year. His doctor said he was ready to go back last year. You are lucky that your son is in middle school and not high school where the credits start to really count. I may try the ibuprophen once a day at the beginning and see if that helps. Best wishes on school (and T&A!). Oh, by the way, are you having a deep-nasal culture done on your son while he is put under for T&A? My son's dr. recommended that he get this done to test for MARCoNS, coagulase negative staph, and mold. To her surprise (it usually takes several tries) he was positive for staph. We think since son was asleep the culture was deep enough to get a good reading. Treatment helped with fatigue issues and healing.

So glad to hear your daughter's cough is gone! Mold is a biotoxin and not good for anyone's health much less kids with PANDAS. Way to go!!!

Have you treated for parasites yet? Just a thought. My son's fatigue improved greatly with this treatment. He is doing some treatment for parasites for the 4th time since starting treatment.

Thank you so much Hopeny, you have no idea how timely and relevant your input is. Now on day 3 of abx. he seems to be settling down a bit. I think the side effect of benedryl (sleepiness) was actually very helpful in the first few days of this which makes sense along with the obsessive thoughts and anxiety. You are lucky to have found a good psychologist in your area. We are on the other side of the states, but thank you for the offer. Started looking today (thanks DUT for recommendation) because just the stress of chronic illness over 2 yrs. seems to be taking a toll on him. Keep healing and best wishes to your family! Julia

Just to add on to LLM comments on KPU. This was one of the first tests done on my son and is ruled out with most patients. I believe my insurance paid for this test - amazing, I know!

Vinegar is also a good mold deterrent. Great info. Red!

Dut--Thank you! Checked up on you a while back. Hope treatment is going well. Take care.

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb Another thought occurred to me that you want to make sure the cod liver oil has no toxins/metals in it. All the ones tested from our Vitamin Store (best quality) did not test well for these reasons. We buy our salmon oil from www.VitalChoice.com. I order 3 (180 capsules) at a time so there is no shipping cost. These tested our well with our dr. (muscle tested).

Great news! Best wishes on his college experience!

Just started thinking that maybe the "not wanting to get older" is an OCD symptom. He said "cannot seem to get out of his head". LLM-Thanks for your reply! Wondering if your daughter's cough is the same? As for air conditioners, we do not typically use them in our part of the country, so not an issue. They do seem to present some issues with mold so good you are looking into it. I wonder if finding the manufacturer on line and finding out about maintenance would be helpful. There may be more that you can do to clean the unit itself. Can it be removed so you can look at duct work as well?

This forum helped move us to the lyme board a while back, but checked with this forum whenever possible. But now it is time to return here as, I believe, lyme treatment along with several other treatments are over or nearing the end. Really need to pin down dr. on what we are now treating. Ds14 did have approx. 6 weeks of 'starting to feel better' for the first time in over 2 yrs. Then, had his first "PANDAS" flair since starting treatment with this doctor. Dr. thinks it was a variety of different things that started it. I wonder if it is myco since he starts with cough and it gets worse from there. This time was a bit different since he started with 'Not wanting to get older and wanted to die!" which progressed into cough/throat tic/stomach pain. My prior back-up plan (start abx immediately) was not available at the time and he was already on Rifampin so did not know what to do. Dr. took him off Rifampin immediately over phone. Used Advil/Benadryl in the meantime and continued with detox/thyroid support. Had to wait 2 days to see doctor so symptoms ramped up more than I had seen during last flair over 1 1/2 years ago. Now Dr. put him on Augmentin-3 weeks and Azithromycin-several months. He told dr. that he felt better on Quintessence/lipohealth mix so she added that back along with Artemsinin/Mimosa pudica. Parasite treatment will be started as soon as all meds are received. The Mimosa Pudica treats parasites/depression so hopefully this helps with the depression part. He is also taking probiotic/gaba mix which helps as well. The 'depression' issue is one that he seems to need some help in. Normally, he tries really hard to be happy but I can see it wearing on him over the months/years of treatment. Took him to counselor but she was not very receptive to a chronically ill child. Any ideas for this would be greatly appreciated.

My son had similar issues. You can see on my signature line all the things he has been treated for so might give you an idea.

My son uses salmon oil/chlorella and, yes, it is a lot of tabs but he is used to it. The chlorella is produced by a company that now tests it (since the Japan nuclear incident) to make sure of its purity (bought special equipment just for that purpose). Son's dr. also uses ART (muscle testing) on it every visit to check for the same. He has used detoxamine suppositories a few times but not at the moment.

PM's you.

Ds is on fourth (2nd time on big one) parasite treatment after a big flair-up. Are'nt they always there but increase without good immune system?

Thanks! We talked about them at our first vist and doctor was pleased that we give cod liver oil. We use children's DHA soft gels, made from 100% arctic cod livers. DS gets 252 mg total Omega 3s (82 EFA, 125 DHA, 45 mg 'other Omega-3s") per day. Does this suffice or is the more to it?Newb All I can tell you is what my son is taking: 3 sockeye salmon oils (3,000 mg) along with 20 Chlorella tabs (Healthforce Super Foods) 3x day before each meal. Taking them together creates some more benefits of which I have read but do not know the details. My son is 14 yrs. old and over 150 lbs. but started these 15 months ago when he weighed much less.

HI Julia, Vitual academy is specific to your state or all states? I am opting for homeschool since Kinder is such a breeze and healing is most important at this time. It is a country-wide school but is only offered free in some states. Just googled "What states have Virtual Academy for Free" and came up with several.