JuliaFaith

Here are the ones we have tried: - 2-week dose of Azithro (500 mg 2xday) (after cough this summer) - 2-week dose of Augmentin XR (not sure about dosage) - 4-week dose biaxin (500 mg 2xday) What is 'full-strength' Biaxin? Thank you for your input.

Son did have a tic that has gotten substantially better. How long did it take on abx to see a change? It seems we would have seen/heard some change(s) on a 30-day abx? Thank you for your input. I wish you the best.

He has been on a 10 day abx and a 30-day abx with no change at all. We did find a parasite at one point but it is gone according to blood test. So cannot seem to find any evidence of an infection still going on. Any ideas? Thank you for your consideration!

Have heard/read two ways of thinking on this, but it is making it difficult for me to know what direction to go in. Our Dr. says that it will gradually subside and is doing so. My ds12 is only on naturopathic/homeopathic meds. and nothing else. He is in month 7 of all of this and I wonder if PANDAS is the reason for continuing symptoms. Dr. has tried anti-biotics (30 days) 2/3 steroid bursts but these have done nothing. All his tests have come back fine (except Cunningham). Now a rash on hands, knees, feet, elbows is sending us in the direction of a rheumatologist. It seems we are looking for something else besides PANDAS to justify IVIG. His symptoms are headache, stomach ache (extra painful after eating), muscle aches, and some fatigue. He thinks that he will never get better. One test did show that his small intestine is inflamed which confirms the stomach ache. He is already on a gluten-free diet for stomache aches that appeared before this all started. Some people on here have said that it does not go away without some kind of treatment. Others seem to think it will take 1-2 years to go away on its' own. Any input would be greatly appreciated.

Interesting treatment. Long-term steroids would not be my choice. So good to hear that she was cured!! Thank you for sharing this. Interesting that it took 2 years - similar to PANDAS.

Thanks for the information. Blood tests and MRIS look good so not sure which direction the Rheum will go with this.

You know, we really should get together some time and talk. My son swims wherever there is water, but he has not been swimming at Lk. Sammamish. He was actually floating the river at Carnation. Apparently, the flu can start this JDM off. It is interesting that we do not know their triggers and it seems like it could be any virus or bacteria. Thank you for your help and interest.

DS12 has had continuing symptoms of headache, stomachache, muscle aches for 7 mos. now since initial PANDAS exacerbation. Treatments and tests have come up with nothing much (except for Cunningham). He has not had an IVIG and local lab tests for Lyme were neg. Because of a rash on knuckles, knees, feet after floating in a river, his Dr. thinks he may have JDM. Anyone dealt with Rhuemotologist's and/or JDM? We finally have an appt. in a month. Any insight would be helpful.

HLC Maintenance by Pharmax llc, Redmond, WA 98052 ds12 - 105 lbs. 1 tablet 2xday-3 We get this from our doctor. 2-3 bil cells per tablet (non strep)

Really, that is what life is about--finding those small moments of joy when you can. Thank you for sharing and best wishes while your spouse is out of town! We are doing an on-line program for my ds12 called K12.com which is a free public school that kids do at home. At least, until he is healthier. Julia

You are an inspiration. Thank you. Have you thought about going into the medical field? Best wishes on your treatments. Julia

We are in a waiting period too. How many are there of us? After 7 mos. with not much relief, and no pos. test results to go on (except Cunningham), we are waiting to get an appt. with a Rhuematologist which could take months. Just today he was put on Naproxen for inflammation. He is on about 10 naturopathic/homeopathic supplements as well. We are gluten-free as well. My ds12 wants the gluten-free frozen donuts from Whole Foods. They are so expensive but a nice treat once in a great while. My goal every day is to find some little thing that brings joy. Whether it is a smile from my son or the sun peeking out of the clouds or rabbits in the yard. I also try to remember that there is something to learn from all of this and hope that that can be accomplished as well. Best wishes with your waiting and treatment. Julia

So glad you are making headway with your DS! My DS12 has had flu-like symptoms since getting sick in March and has never fully recouperated. He still has headache, sore muscles, stomach pain, fatigue, etc. One of his tests came back a bit high (after all others [except Cunninghams]coming back neg) - smooth muscle AB, and now he is being tested for 'Dermatomyositis'. Blood tests for this, creatine kinase & adolase, both came back neg. but they still did an MRI on his pelvic area to make sure muscles did not show signs of this. Only mention this, because some of what you are experiencing sounds similar. DS dr. did think that his initial trigger was micoplasma, but now she is suspecting the flu which this new disease follows. We have not done the IGenex for lyme yet but I am thinking we should. Dr. does not think we should but may be persistant in ordering it. Lyme is just not prevalent in our area of the us (West coast). Also, DS does not have some of the symptoms. Your post has me thinking of looking at Bartonella again. Is this part of the Igenex testing? It sounds like your doctor is doing a thorough job which is great! Best wishes for your family.

My ds12 (100 lbs.) was put on Biaxin for 1 month in hope of getting rid of some of his initial exacerbation symptoms. We did not have any symptom relief. His Dr. thinks he was triggered originally by 'walking pneumonia' and we have yet to get rid of most of his symptoms (headache, stomachache, nausea, muscle aches, little tic, little OCD). His tests have all come back looking good so far so we may be heading towards IVIG next. He was on 250 mg twice a day. Hope this helps. This summer, he was triggered again, his dr. thinks with mycoplasm again, and she put him on a 2 week dose of Azithro. He was almost over that within 1 1/2 weeks. Still has all his other initial symptoms. Dosage: 500 mg once/day for 6 days. Hope this helps.

My DS12 was on massive allergy and asthma medications before he was diagnosed with PANDAS. What happened was, after no change and neg. allergy tests, the allergist took him off all the meds and gave him an asthma breathing test, that was $40 out-of-pocket, and declared that he did not have asthma. This was a long and exhausting process after all his illnesses and proved nothing. After that is when we went to our pediatrian, who just happed to treat PANDAS and diagnosed our son. He did get sick recently (Dr. thinks it is mycoplasma,walking pnuemonia, that is his trigger or was originally) with a cough out-of-the-blue (one second to the next) and had a hard time stopping. We tried asthma inhaler since we were in Yellowstone with no luck. Just had him relax and that really helped until we got him on Abx the next day which helped get rid of cough totally within 1 1/2 weeks. My son also tested neg. on lyme test (not igenex). We did lyme panel since everything else came back neg. and he has not gotten better. He has headache, stomachache, muscle aches, & fatigue (and has for 5 months now). Hope some of this helps. We are still trying to get into to see an immunologist so best wishes with that. Also looking into IVIG.

Yes, we do see Dr. Keller. That would be great if you could drop them off at her office and let her know they are for questions on 'Kyle C.' Thank you so much for your help. Best wishes.

Thank you very much for this list! Will send on to our doctor. This is the only missing link in our puzzle at the moment before IVIG. Take care.

Sorry to hear about your son's cough. My ds12 started a cough, out of the blue, recently (while in Yellowstone) and it was pretty bad at first. We called his Dr. the next day and she put him on heavy duty antibiotics immediately. She thinks his trigger is Mico but we do not know for sure. His cough slowly subsided over 1 1/2 weeks. Initially though, the abx really nipped it in the bud. His last cough last over 2 1/2 weeks and turned into stomache flu symptoms (we think it was his initial major exacerbation for PANDAS). Our Dr. told us to call if there is any illness at all (we are still trying to figure out his triggers though). Not sure about your situation. I hope he is feeling better soon.

After not being able to get my ds12 in to see an immunologist that knows about PANDAS, my doctor may start doing some of the tests that would be done. On this forum, I did read about the c3d circulating immune complexes test and a Stricker CD57 test. Any other ones that would be good to know about? So far the only test that came back positive was from Dr. Cunningham's study but there has been no relief of symptoms in 5 mos. Thank you!

My ds12 has been on Curcumin Extract since day 1 for PANDAS inflammation. He take 2 (500 mg) in the morning and 2 in the evening without fail. We are using the VITAL Nutrients brand. This is one of our "must take" natureopathic remedies.

Thank you for all your input on insurance. Never in a million years would I have guessed that talking about insurance would bring tears to my eyes. This is our 4th insurance in as many months so my head is rolling with insurance stuff. Best wishes to you all and your children.

My ds12 has tested neg. on everything except Dr. Cunningham's report. He has had a few OCD/tics, headaches, muscle aches, stomaches, fatigue etc. for 5 months now with no relief. We have tried predisone and 2-week anti-biotics since his initial exacerbation in March. We are currently trying a 30-day Biaxin and may extend it another week along with another 5-day predisone burst (3rd one). His lyme test cam back neg too (the one with all the bands - not igenex though). Nothing has helped his symptoms. We have a new insurance (CIGNA) and am wondering if we have any chance at all of having IVIG covered with no other neg. test results? Anyone have any information to pass along? It would be greatly appreciated!

Anyone considering homeschooling should check out their state laws and go on a local homeschooling forum to see how it actually plays out in real life. For instance, here in Maine, we must do testing or have a certified teacher do a portfolio review. The difference in assessors can make a huge difference in how one goes about home schooling. I have always homeschooled my children in a very relaxed child led manner and we found a teacher to do our portfolio reviews who agrees with my teaching style, so its not an issue to have a ton of paperwork. The law really just states that progress must be made each year. It doesn't say how you must go about teaching. Some online schools are very rigid and those programs may not work for kids who are dealing with PANDAS unless the teacher is very understanding. Angela Thank you for the information on home schooling. This school is considered a 'public' school so that is why there is no cost. All lesson plans and materials provided and one teacher in our area for assistance. The curriculum was developed by a group of teachers specifically from our state (WA). So I guess every state has their own set of curriculum that addresses their state requirements. We have to do 'state testing' as well as testing at the beginning with this school so they know where my son is in his learning. Since my son was ill this last year during state testing, I just had to write a letter asking that he be excused which was no problem. Will post some more after we give this a try. It is available part-time as well. Will try this first and then home schooling next. There is definitely more flexibility in home schooling than doing this program.

Yes, so many parents with PANDAS kids are afraid of school so I thought this might be helpful. I just stumbled across it myself after being given very few options from my school district for my ds12 who has not gotten better yet after his initial exacerbation. Even with home school, they want pretty tight control over what I would be doing and if I am meeting their 'hours of education' guidelines.