JuliaFaith

Hair test at Doctor's Data, Inc. in Illinois is very interesting on these types of tests. 'Potentially Toxic Elements' on top of page and "Essential and Other Elements" on bottom. Copper on bottom. My son's toxic levels went up on 2nd test which scared me until our dr. said the test was showing that he was getting rid of toxins (more in hair). Seems as though insurance covered this too. Second test also showed more vitamins in hair which meant absorption in stomach was doing better too.

So sorry to hear this! You have been thru a lot over many years. We have continued to try to find what is going on with my son. It has been over 2 1/2 yrs. but we have found and treated many things. We are still treating and trying to find all the pieces of the puzzle. You are working on it and finding out some things so you are doing great with what you know. Keep looking and treating. Just a few suggestions: You may want to give some background info. on your signature line so you do not have to spell it out with every thread but would give others some background from which to come up with ideas. Dr. Shoemaker genetic testing...this testing told me that my son will not heal on abx alone which was helpful since son is seeing an ND now. Have you been checked for lyme etc.? Keep asking questions on here. If no one is answering, re-word the question, give some more info. until question gets answered, keep trying. Persistence is necessary in getting your family well. Look forward to seeing your posts.

Soooo good to hear of your gains! May they continue and no longer be an issue sooner rather than later. My ds14 has been thru a bunch of healing in the last 1 1/2 yrs. He was actually beginning to feel better for 6 weeks after ending viral treatment. First time in over 2 yrs.! The difficult part was putting the brakes on a bit to keep injuries to a minimum! Still working on PANS but hopefully done with lyme and babesia! Will see.. Looking forward to hearing more of your progress.

My son is on his 3rd year of K12 curriculum. His local school district only offered a tutor 2 hrs. a week . Have not seen anything about evolution in curriculum yet and he has been enrolled since 7th grade. They do have a private paid school side that may focus on that aspect. We are using their free schooling which is funded by public $ so have to limit religious references. It has worked for my son since he has been so ill. We hope to get him back to his local school some day (2000 students!). Doing this reduced the stress a bit after son got past confrontational behavior with treatment. Before that was a bit more stressful (putting it mildly). Hope you find a good plan that works for your family.

PANDASnetwork.org is a great resource for your questions. It seems some children's immune systems do improve as they get older and, in our instance, it was starting to happen after all infections, viruses etc. had been addressed (until latest exacurbation anyway!). Keep looking for pieces of the puzzle to get your child well again. If still not well, then keep looking, you will see continued healing if you find those pieces and treat. Wish you well.

My son is in the middle of PANS exacurbation and his dr. Muscle tested him and seemed surprised that lyme tested neg. So, while lyme was part of healing, it it is hopefully deactivated and possible one of many things that caused the PANS not the only thing. At one time I was hopeful that getting rid of lyme would get rid of PANS but dr. Said son will probably always have PANS. Stem cell research is very active right now for auto-immune. We just keep hoping!

Ditto MDmom. Same here.

When my son had T&A, we had ENT do deep nasal culture. This can be very uncomfortable when they are awake (per dh). We asked ENT to test for MARCoNS, coagulase negative staph, & mold growth. His test came back surpisingly positive with MARCoNS, so did 3 months BEG nasal spray from Hopkinton Drugs. ND was very surprised that it came back positive the first time. She said it usually takes several tests in the office to get a positive. We figured it was because of how deep they did son's culture while he was in surgery. Good luck with all of this. You may find some answers soon.

Hello Suzan. My heart goes out to you in terms of your expectations not exactly what you had thought. I just went thru the same when my son caught a chest infection and his PANS reaction was extreme and did not have plan really in place after 1 1/2 yrs. of focus on lyme etc. After this exacurbation dr. is now saying another year of treatment! Lyme, thank goodness, is not an issue. Feel a bit mislead but after looking at last dr.'s notes I realize how far son had gone in relatively short amt. of time with current dr. Right before this exacur. hit, son was just starting to feel really better in over 2 yrs. We just hope to get back to that point sooner rather than later. Best wishes on getting the strep under control. Have you checked for MaRCONs? Just a thought.

Can you PM me too? This sounds very interesting.

Thank you for sharing. Such a good message that there is always hope. Best wishes for your family.

Thank you for idea. Did some of this at the beginning but did not cont. once on abx. Best wishes to your family.

Son is on week 5 of flair after getting chest infection (his trigger). Before this was just starting to feel better after more than 2 yrs. of flu-like symptoms. Currently on azith., detx, thyroid meds, supplements (i.e. TravaCor-neuro support-5-HTP-L-theanine-taurine all in one tab). He is ART testing neg. for everything else (viruses, chest infection). Any ideas on length of flair? Read 4-6 weeks. His last flair was 2 summers ago and he had abx. right away. This time had to wait 3 days which makes recoup. time longer. Any ideas welcome.

Hello Dut - Left a message with Shelley M. and a friend recommended her as well. Have not heard from her yet. Will PM when I get a moment.

The info. in this thread apparently came from the thread below. Gave me more resources in looking for CBT therapy. http://www.facebook.com/note.php?note_id=252902664739173 Probably already been posted: www.pandasresourcenetwork.com/about-pandas/find-a-doctor.html

We are also currently in the market for a CBT therapist. It is so difficult to get started. None of our in-network therapist seem to even do CBT so now am looking outside network. One website I looked at talked about getting your insurance to cover an out-of-network therapist as in-network if they have none in-network that deal with your particular therapy. Went on the International OCD Foundation website and found 4 in our area. My plan of action is to text them with what we are looking for and see if there is a fit, just to get started (CBT/ERP therapy; understands chronic illness; active participation therapy not talk therapy where you relive your neg. experiences). Not sure if this will work but seems a good start. We are on waiting list for 2 therapists (phychologists) with one that accepts insurance but not sure how long their waiting lists may be. A Psych. that our dr. recommended wanted $600 for first visit, with a $200 non-refundable deposit, plus $280/hr. for subsequent appts. And does not take insurance. Just the stress of hearing this makes me need to see a therapist! Your post reminded me that I have not tried local medical college. Good luck on your appt. Will be looking forward to hearing about your progress.

Thank you for posting your home check info. It reminded me that I still need to get curtains made. Just read that EMF's can not only make mold grow faster, but can create more virulent strains of mold.

Just found this book at the library. It has 13 lyme-literate doctors discussing their approach to treatment. Very good reading. "Insights into Lyme Disease Treatment" May have posted about this book a year or more ago.

If you are on the Health Force chlorella, there should be only improvement from taking it right away. It is basically like taking a lot of green veges at once.

Sorry so late on posting. My ds had a rash in the groin area from exercising and his dr. recommended "Shea Moisture-Raw Shea Chamomile & Argan Oil-Baby Head-to-Toe Ointment" from Target. Inexpensive, organic, and worked really well on rash.

Thank you for providing info. on this book which was published 2008. While I was looking for it at our library I came upon a more recent book called "An Epidemic of Absence: A New Way of Understanding Allergies and Autoimmune Disease", published 2012. Will order and see if it is any good.

Very interesting show. Took one of the questions for the next dr. visit off my list after listening to it. Thank you for posting!

The office we were treated in had EMF curtains and paint, but they are moving this next month, so will check with them again on these issues. It seems the goal of the office is to have a healthy environment for the very ill patients that they treat, and it also seems, from what you are saying that with level 3 Auto testing that it is essential as well. Thanks for mentioning this.

Ds is just starting 2nd full parasite protocol since beginning of treatment. Did just read on one of Betterhealthguy.com recap of conference that dr kK believes parasites can be a root cause of Pans/Pandas. Son also just had a major flair 2weeks ago which is prob the reason for protocol. Every time son starts bitting nails dr puts him on some new anti-parasitic supp. Since flair doing full-blown protocol this time (treats worms and parasites).: Biltricide 2 days Ivermectin- 4weeks Alinia- 4 weeks Last treatment 20 months ago son showed some good improvement. Will be interesting to see how he progresses tthis time. Sorry for typos on phone keuboard.