JuliaFaith

My ds12 has had constant headaches with PANDAS and none of his tests have shown anything other than PANDAS. Another thread recently stated that herxing causes headaches, stomaches, muscle aches, fatigue as well. SF Mom posted this recently: The Herxheimer Reaction is a short-term (from days to a few weeks) detoxification reaction in the body. As the body detoxifies, it is not uncommon to experience flu-like symptoms including headache, joint and muscle pain, body aches, sore throat, general malaise, sweating, chills, nausea or other symptoms. This is a normal — and even healthy — reaction that indicates that parasites, fungus, viruses, bacteria or other pathogens are being effectively killed off. The biggest problem with the Herxheimer reaction is that people stop taking the supplement or medication that is causing the reaction, and thus discontinue the very treatment that is helping to make them better. Although the experience may not make you feel particularly good, the Herxheimer Reaction is actually a sign that healing is taking place. Not sure if this is the cause but it is something to think about anyway.

Found a program that offers FREE schooling on-line. It is financed by tax dollars. They supply lesson plans and supplies. A teacher in your area is available for consulting and monitors testing etc. They are in most states I believe. Once a month, there is a meet at an area museum, zoo etc. Found out about this through a friend (not our school district). Students are still required to put in a certain # of hours a week. You have to get out of your district and into theirs. You can also xfer IEPS, 504's etc.

It is amazing how small things can turn into something big. Watch out things like this can snowball! Enjoy the ride and thank you for all you are doing!!!

Good thought - thank you for sending. Best wishes for your son.

Are you sure the parasite is gone? Was he retested to be sure? It could be a trigger. Can a parasite be the trigger? When I read your comments it gave me goosebumps. A year ago we were camping for a few days and at the end he started with extreme stomache aches for 3 mos. We then found our current Dr. and she put him on gluten-free diet which helped pretty quickly. Since then he has continually been getting sick and was diagnosed with PANDAS when he never fully recoverd from his illness this March. You really bring up an interesting point. At our last Dr. visit we had decided to re-test him for the parasite just to make sure it is gone. Cannot remember what it was but you can get it from rivers, lakes etc. Thank you for much for your insight!

Thank you. Very interesting...

Thank you for your insight. I hope your daughter keeps improving! Should have mentioned that my ds was climbing a tree trunk when he hit his head!

My ds12 hit his head and within a few hours he suddenly starting coughing and had a difficult time stopping. His Dr. thinks his trigger is myco but we do not know for sure. He was put on Azith. the next day and cough went away but his other lingering symptoms (headache, muscle aches, stomache) are a bit worse now. We did some blood work a few weeks later and he tested neg. for strep and myco. He has tested neg. on everything so far (except a parasite which he was treated for a month ago). He is being tested for Lyme thru a lab (not igenex). Do not have results back yet. Has anyone had an excaburation with a bump on the head? After 5 mos. and two 2-week anti-biotics, prednisone bursts (2 - 10 day) he has no relief so are probably looking at IVIG soon. Any feedback would be helpful. Thank you!

So excited for you! Here is hoping for continued improvement and health! We are considering IVIG right now. My ds12 just has flu-like symptoms and a tiny tic. There have not been any real improvements in 5 months and just had an exacerbation with myco p. Started Biaxin for 2 weeks and will consider IVIG next. Good to hear your story and wish you all the best!

Way to go!!!!!!!

We are not sure how long he has had it, but he had flu-like symptoms in March and has not been well since, so not sure if that was when he caught it. He had sushi at a grocery store the day or two before he was sick... He has also been swimming in a river and lake so not sure how he caught it exactly. We had to answer a bunch of questions from the public health dept. so they can trace it to any other outbreaks. We are on well water so hopefully that is not it. We just thought his PANDA symptoms were not getting any better. They are treating it with a drug called Alinia 500 mg of which insur. only paid $35 and we had to pay $125! It is only a 3-day dosage which is great.

For my ds12 we were running out of options on treating extreme stomach pain, headache, muscle aches etc. when we did another bank of tests (all prior tests came back looking good). It came back positive for 'cryptosporidiosis' a parasite that anyone can get (yuck). Now we have something to go on for treatment. What a surprise!

So sorry to hear your struggles! My heart goes out to you. Another possible choice are centers that do IVIG in the home so it is not as expensive. They are called "Coram Infusion Centers" and they have several places. There just happen to have one where I live in Washington State. I do not know anything about the company except that they do IVIG so hopefully, that will give you at least another option to look at. Best wishes. We are trying everything too and have not had any luck yet, so we may be looking at IVIG for my ds12. Take care.

We are Dairy free and at this time gluten reduced......( DS had really high casein peptide ratio and we were advised to stop dairy about a month ago) will probably probably move to gluten free( it is the fastest way for me to lose weight ironically) We have ot done it since finding out about PANDAS- but ds has lots of stomach pain and I am going to start a symptom tracker and see if I can tie it back to gluten- even though an endoscopy in the fall determined he was not celiac....keep us posted- I am curious too! Brandy We have been gluten-free since my son had stomach aches for 3 mos. last year. His stomach aches went away in about 4 days. He already had been thru endoscopy showing just a little inflammation in the small colon and not gluten insensitive and not celiac. Go figure! Now his Dr. thinks it may have been the start of PAndas but we are still gluten-free and my husbands collestrol (SP?) dove down. We all feel much better and our heads feel clearer than ever.

My Ds12 is on "Vital Nutrients" 500 mg. Two in the morning and two at night. We purchase it through our Dr.

Actually, on the bottle they are 'UNDA' and this is my first experience with homeopathy so you probably know more about it than myself. My ds12 is on 3 different ones. He takes 4 drops of each 2xday. We might try for 3 mos. and see if they help at all. He also takes 'ignatia amara-ignatius bean' and 'nux vomica - poison nut' to help reduce stomach pain. I still want to look these up on google and see what they are as well.

Have you had the Cunningham test? What antibiotic did you use? I'm sorry - I don't recall your son's story and what has led you to a Pandas dx. He was on Clari/Amox? in April. Sorry, but that is all I have in my notes. He did test pos. with the Cunningham study (about 1 month ago-but dr. suspected PANDAS and so was trying bx and pred.). Ds12 started with stomach aches for 3 mos. last year which we remedied with a gluten-free diet. Then he caught the H1N1 flu in Nov., then another flu in Jan. and just kept getting ill until he got a cough that would not go away (2 1/2 weeks) that turned into stomach flu symptoms and he just has not felt well since. Not sure when his throat noises started, but it was a while after the last illness. He says it just feels like his stomach is trying to throw up when he makes that noise. It has calmed down quite a bit (was really bad during bx) and happens the most after eating which causes him excrusiating pain after each meal. He still has headache, muscle aches, stomach ache, nausea, fatique. Maybe the Prednisone helped with his stomach noise, not really sure if it was that or just the time. It has been almost 4 mos. since his coughing illness which the dr. thinks might have been walking pnueomonia which started? the PANDAS. She thinks the PANDAS might have started with the stomach aches last summer as well. Thank you for asking about him.

Are you sure he was talking about strep, or was it staph? Take a look at this: http://infectious-diseases.jwatch.org/cgi/...2/2?q=etoc_jwid This is interesting. Maybe the treatment is being considered for more than just strep. Will let you know more when I find out more. Will post information as I get it from my dr.

I don't know what UNDAS is, but I would caution against any homeopathic remedy that tries to correct the immune system by exposing the child to strep in any form. PANDAS kids can react from mere exposure to strep (do not even require full blown infection). IMO this would be a very risky thing to do. Perhaps a better approach, if you were against long term antibiotics, would be to look into naturopathic options. But I would first suggest a full immuno workup so you understood what the body was dealing with. Thank you for concern. We have had no success with steriod bursts (Twice @ 5 days) and anti-biotics (2-weeks). The anti-biotics were terrible on my ds stomach. He was also on probiotics at the time. So now we are on naturopathic meds (Curcumin for inflammation) and are trying homeopathic along with the naturopathic. The homeopathic meds are just to cleanse the body so that it can work on its' own to get rid of the PANDAS (that is the theory) and treat stomache distress symptom. Now the strep treatments are only being investigated by my doctor to see what is being done in Europe to treat PANDAS (which is why I put it on a separate thread). It seems any new information would be more than what we have now. Best wishes to you.

My doctor is currently looking into this treatment that is used in Europe for PANDAS patients. Apparently, children are given increasing dosages of strep over a period of time so that they do not have reoccurences when exposed again. Kind of like allergy shots. Has anyone heard about this treatment?

Has anyone used the homeopathic approach? If so, have you had any success using UNDAS? Any information would be appreciated. Thank you. We just started trying 3 different UNDAS and a couple of homeopathic meds for stomach pain.

Don't let The Google scare you too much, like it did me! All this talk of "blockage" and constipation! That's what held me back on trying it for a long time, and that's why we've been very cautious and "low dose" about it, too. I'm sure every person is different, and their individual gut issues are probably equally singular. But if our experience is any indication, it's definitely worth considering. Good luck! Thank you for the info. on this! My son has quite a bit of pain after each meal and other stomache issues throughout the day, so will give this a try. Take care.

How old are your children? What does 'PM' mean? Not so 'shortcut' savvy.

Oops, sorry, forget the question I asked about reoccurrences.

It is good to hear your daughter is doing so well. Has she had any "reoccurrences" along the way? It is confusing to me why there has to be such a 'roller coaster ride' just to see if you can get an appt. at Children's. First, they were going to schedule, then they were going to have to see, then it was possible if my Dr. talked to the Dr. it would work out and then they called and said "we cannot schedule you." Very confusing and untimely since we just got the diagnosis a few weeks ago. We do think my ds probably started this with stomache aches last year which got better after going on a gluten-free diet. He has been on a 2-week anti-biotic with no reduction in symptoms. WE have also tried 2 sessions of 5-day prednisone with no relief as well. His tests, so far, show he is healthy. One of my concerns now is how to educate him with this condition. He is supposed to go to Jr. High this next year. Why did you elect not to pursue IVIG? Is it only available to people who can afford to go see Dr. K or B? It is interesting to hear that your daughters symptoms were similar to my sons since most all symptoms discussed are about the tic/ocd. We have an appt. to see Dr. Keller next week so have not spoke to her since getting our Cunningham results back. Her nurse said something about the Dr. learning some new info. last weekend on stomach symptoms so that might be interesting for you to speak to her about (or I can let you know after we see her next week). Thank you for your input, I really appreciate it. Take care.