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Everything posted by swim

  1. For both of our sons, the trigger seemed to be mono. When our second son showed symptoms (tics), I remember taking him to our pediatrician and asking for the blood test. He did not show any signs of any illness, but the she tested for strep and mono. Tests came back positive for mono.
  2. Sibling of DS12 started tics during mono (he was a few months from turning 9). We did 30 days of keflex - tics stopped about 2 days after starting treatment with keflex. We saw tics return for a day or two about 4 months later, but we did keflex again for 30 days. It has now been a year and 3 months since the first tics appeared during mono and younger brother remains symptom free. We did 30 days of keflex at initial onset and then 30 days again when tics appears a few months later. He has been totally symptome free with no abx for the last 11 months. So, I would treat sibling for at least 30 days and not take a chance on full blown PANDAS/PITAND. If we see tics again, we will do abx immediately since we are still struggling to rid DS12 of tics after having PANDAS/PITAND since age of about 4 1/2 and not being diagnosed until age 10.
  3. We've seen increased symptoms after swimming in pools, so we tried the epsom salt baths after swimming and it seemed to help.
  4. I am not sure I can be much help since we feel like we are in a big guessing game ourselves, but I know that hearing the experiences of others can help. I would think that 250 mg once a day of keflex might be too low a dose for prophylaxis. Maybe try 250 mg twice a day and if symptoms improve over time you can try to reduce back down to 250 mg once a day again. Have our son's symptoms gotten worse or are they stable ... interesting question. We have been dealing with PANDAS/PITAND for about 8 years, but did not identify it as that until June 2009. Looking back 8 years ago, it was very difficult (tics, OCD, paranoid behavior, touch sensitivities, bed wetting, joint pain, difficulty sleeping, etc). Somehow we got lucky and he improved without antibiotics. Instead, we were treating him for metals, candida, mineral deficiency and food alergies. After about 2 1/2 years, we were just left with tics that came and went and mild OCD that other people would never notice (he has to rub his hands on the pages when he reads a book). Starting keflex in 2009 allowed him to go the last 1 1/2 years with very few tic episodes. When there was an episode, increasing keflex from 500 mg a day to 1,000 mg a day always helped until recently. Note that we also had his tonsils and adenoids removed April 2010. For about 4 months after the surgery, he was symptom free. Since January, things have been different. Symptoms seem to improve/worsen every few days or even from day to day. This makes me think we have something else going on, which might very well be related to the myco p infection and 2 other bacteria we just found in his gut. When we took him off abx in Feb, his tics did not worsen as we expected. We are on day 2 of our new antibiotic for myco p and supplements, but of course he woke up yesterday with a stuffy nose and sore throat ... So, I guess it will be longer before we know if the new protocol is having any affect. Argh! Not sure I helped, but maybe think about 250 mg twice a day as a prophylaxis and then try 250 once a day if he can be stable for a nubmer of months at 500 a day. Just a guess based on our experience, but every child is a bit different. Good luck. It will be interesting to hear how things go!
  5. Our ds is 12 and approx 68 pounds. We did keflex for about 1 1/2 years (started June 2009 - stopping in Jan 2011). Our treatment dose was 1,000 mg (taken as 500 mg twice a day) and the prophylactic dose was 500 mg (taken as 250 mg twice a day). We also had to go back and forth a lot between treatment and prophylactic dosing. In Sept 2010, it seemed keflex was not working anymore and we switched to amox for approx 30 days. Amox seemed to help at first, but then seemed to also stop working. We went back to keflex with some success until Jan 2011, then we felt it was not working again. We tried clindamyacin and had bad reactions. End of Jan, we stopped all abx because nothing was working and his body just seemed overwhelmed - just wanted to give him a break. We did some keflex again at the beginning of March and it helped to decrease symptoms. Yesterday, we found out he appears to have an unresolved myco p infection so now we are off keflex and switching to doxycycline. We also identified 2 other bacteria in his gut that are resistant to keflex, but the doxycycline should help to resolve.
  6. We just got the Genova CDSA results and a number of blood test results back today and I want to thank everyone on this forum. I kept reading about mycoplasma p and we continue to struggle with PANDAS/PITAND symptoms so we had ds12 tested. Well, it turned out positive. Out of normal results were as follows: • Mycoplasma p IgG level: While in the indeterminate range, we are going to treat as an ongoing infection • Citrobacter amalonaticus: +4 • Klebsiella oxytoca: +4 We are going to treat for all 3 with doxycycline at 100 mg once a day for about 3 months. Any thoughts on this abx or dosage? He is 12 and approx 68 pounds. • Lactobacillus: no growth (this was surprising since we have been giving him probiotics with lactobacillus - Custom Probiotics and Culturella). Trying a different probiotic to see if we can get lactobacillus back in his gut. • Celiac testing: Immunoglobulin A was very low (40 on a normal range of 58-358) and may indicate possible gluten issues. Other celiac measures were fine, so may be more related to a taxed immune system. • Vitamin B12 and folate: out of balance • Vitamin D: very low (22 on a normal range of 32 to 100) • Ferritin (indicative of iron stores): low We were very concerned about candida, but he tested fine for yeast. Tomorrow, we will start our new plan - doxycycline, a new probiotic, B complex, liquid B12 with folate, multi vitamin with iron and high dose liquid Vitamin D. Wonder what will happen ... Any feedback on treating myco p with doxycycline (dose, length of time, reactions), would be appreciated. Thanks!
  7. Our ds12 used to get canker sores, too. Never figured out why exactly. We followed the same strategy that monarchcat mentioned and changed his toothpaste to one that does not contain SLS (sodium lauryl sufate) - he is using sensodyne. No canker sores since changing to a different toothpaste.
  8. I remember the day we took our ds (then 10) to the ped and I said he had strep throat. The ped looked in his throat and said there was no sign of any infection. No fever, no stomach ache, no sore throat - no symptoms at all. Somehow, I got the ped to do a rapid anyway and in his own words, "That is the fastest most positive result I have ever seen." These kids make is tricky for us by getting sick and not presenting with symptoms. My own opinion is to wait on the vaccines. Get her healthy, get her tonsils out and let her recover. Then, you can assess the vaccines in a few months. You have too much going on with her body right now. You should be fine to wait a few more months for the shots. We have delayed in the past and I was always glad we did. One year, we even got the doctor signed waiver for school because it just didn't feel like his body could handle the shots. Later, we caught up with the vaccines, but at the time I think it was better to wait. Listen to your gut feeling, it is probably right ...
  9. Yes, I think the doctor does have something in mind like the Myer's cocktail. Luckily, our ds12 does fine with needles - has probably been poked more in his life than I have been in my own life ... Thanks for your feedback - glad to hear there were no negative results.
  10. We were hoping for lots of test results today (myco p, lyme, bartonella, thyroid, celiac, hormones, digestive analysis, etc), but our doc rescheduled to Monday because she wants to consult more with other doctors - wonder what that means ... Anyway, I do know she will be asking us to consider intravenous vitamin therapy because we already know our son has a malabsorption problem. Has anyone else tried this? If so, did you see any bad side affects? Any good results? Any increases in PANDAS/PITAND symptoms following treatment? Any input would be appreciated. Thanks!
  11. When our ds was between 4 and 5 years old, we had to deal with sudden onset of soiling. Our ped tested for parasites, but tests turned out neg. We then turned to lactose intolerance. Removing dairy worked immediately for a few weeks and we thought problem was solved, but then it started again when he was still on no dairy. He would eat something harmless like an apple and have an accident. We ended up treating for systemic candida (yeast overgrowth) and problem cleared up. I never want to put a damper on something when it seems someone has found an answer, but I just wanted to toss this out there in case you see the problem return.
  12. I am sorry - I know and understand your frustrations. Our ds had itchy bottom when he had systemic candida (bad yeast infection). Our experience is that it takes months or even years to clear systemic candida, so a week or so on anti fungal may not be enough. Also, being on teh anti fungal is probably causing dye off issues and may be increasing symptoms.
  13. I agree with you - mono is a virus so abx should not make a difference. I have no answers. I look at it from the standpoint that the abx were not to treat mono since it is a virus, but the abx were used to do something to the immune system to stop the PANDAS/PITAND reaction. I just know it worked to stop the tics and we don't have ongoing PANDAS/PITAND symptoms with this child like we have with our older son who was not diagnosed for about 7 to 8 years following first symptoms.
  14. Alternative diets are a lot of work to get started, but once you get in the groove it all becomes a habit that can be maintained. It's all about forming new habits and behaviors. Might be good to see a naturopath to decide what type of alternative diet is best or to do some food sensitivity testing to be sure you don't end up overloading on something that is actually causing more issues (ie eggs). We have always done diets based on the idea of reducing candida(yeast) because of the antibiotics. You can google candida diet and find lots of sites that list foods that are ok, foods that are bad and recipes. www.thecandidadiet.com has lots of info. There are also a number of good books (The Yeast Connection Cookbook) that can be helpful. There are natural substitutes for sugar (ie. xylitol and stevia) so you can reduce sugar intake. You can eliminate wheat and use gluten free grains for cooking (use xantham gum to get baked goods to stick together without the gluten). The gluten free gourmet has good cookbooks - just use substitutes when it calls for dairy (ie. rice milk, almond milk, water). I also like the book 1,000 Gluten-Free Recipes by Carol Fenster. I know it will seem like too much to take on, but once you get into you new eating habits you will forget what you used to eat and it will be much easier. P.S. I suggest to stay away from red dye in foods ...
  15. One more thought on the rages. I don't know if the rages we saw in the past with our son were due to PANDAS/PITAND or candida. His rages happened about 7 years ago when he was 5. We were treating him for systemic candida and leaky gut. It was like clockwork. We would give him the supplement to kill the yeast (garlic, other natural supplements that we rotated) and he would be like an angry teenager 30 minutes to an hour later. Each rage would last about the same amount of time (maybe 45 minutes or so). If he didn't have the supplements for the yeast - no rage. When the yeast got better - no rages. For us, it seemed we correlated his rages to dye off reactions. I don't think this is the case for many people dealing with the rages, but for our situation we are guessing dye off reactions seemed to cause past rages.
  16. Every new symptom is like another weight on your shoulders ... I am sorry you are in this situation ... you are not alone. Our son tics and we had a huge increase the last few weeks that included vocal tics for the first time (also the voice change thing which was heartbreaking to listen to) - we have been dealing with PANDAS/PITAND for 8 years. We didn't know what to do. He was on keflex, so we increased it with no improvement. We tried amox with no improvement. We tried clindamycin because he had a great 4 months after having it before T&A last year. Well, that made his tics the worst we have seen. He was not sick, no one in our house was sick, there was no reason for the increase. We were lost and our doc didn't have any ideas other than to see a neurologist again. So, we guessed maybe yeast was an issue (we delt with a big systemic candida and leaky gut problem about 6 years ago). We stopped all antibiotics/supplements and basically moved to the caveman diet (mostly just meat, veg, nuts, seeds - I know it's hard). We added candex (2 to 4 capsuls a day depending on how things were going) and probiotics at 50 to 100 billion per day. We had one night where he was crying uncontrollably for no reason for about an hour - he didn't know why - was this a dye off reaction? Maybe. We have seen tics decrease about 80 to 90%. Was yeast a trigger for the increase - not sure, but I hear candida can cause neurological symptoms. We have also started up with a naturopath that seems willing to look into everything. We are running lyme, myco p, bartonella, celiac, thyroid, thyroid antibody, candida, inflamation indicators and basic blood tests. Waiting for results in the next 2 to 3 weeks. So, for us, attempting to treat a possible yeast problem helped to decrease the tics while we are waiting to get other test results. Maybe something I said will help - hoping you find some relief ...
  17. Interesting that we met with a naturopath a number of years ago before we knew anything about PANDAS/PITAND and she recommended a homeopathic remedy that contained breast milk based on all symptoms presented by our son. Please update us on how things go. I am very interested to see if you feel there is any improvement in symptoms. We did not follow through with the treatment at the time ...
  18. We have 2 boys, both PANDAS/PITAND. Oldest first showed symptoms when he was 4, but went 6 to 7 years before diagnosis since we didn't know about PANDAS back then. We are still trying to resolve PANDAS/PITAND symptoms. His brother showed some tics in Jan 2010 when he was 8 and we got him on abx right away. Tics stopped within 3 days and we have only had one other sign of symptoms that also resolved quickly when put on abx right away. We also thought we were CRAZY when we suspected second child also had PANDAS/PITAND, but from reading on this forum it seems it should not be a surprise for siblings to also have PANDAS/PITAND. You are not nuts - trust your instincts! It is hard to do things that cause people to question our sanity, but it is the right thing to do ...
  19. I can only think positively ... there cannot be permanent damage ... there is no proof of that ... instead we only have evidence that would support recovery. My gut tells me we have to get all things right in the bodies of these kids - immune system working properly, inflammation under control, diet under control, yeast under control, make sure no leaky gut, proper vitamins, no hidden infections, etc. It seems to be a big puzzle with many pieces. Maybe that is why it is so hard to find the right combination for recovery. This fight is not easy and it is only made harder by the fact that family/friends don't understand. Don't let yourself believe in the statement about permanent damage - believe that we can heal these kids. That is why we are all working together on this forum. We just need to keep fighting and we will get it figured out.
  20. I understand not wanting to be the mom that sees PANDAS/PITAND everywhere - I think we feel that way largely because outside of our "PANDAS/PITAND community" we continually face doubters so we doubt ourselves. From what I have read on this forum and experienced in our own family, if you have one PANDAS/PITAND child your are more likely to have PANDAS/PITAND with your other kids. Our oldest showed the crying, irritability and sleep issues before any signs of tics. He also had sensory issues (I think he would try on every pair of socks in his drawer every morning before he could find a pair that would work on his fee that particular day). Then the classic PANDAS/PITAND symptoms followed. It was 6 years later when our other son showed PANDAS/PITAND symptoms that were caused by mono. We got him on abx within days and symptoms were gone in 3 days. We still struggle with our oldest - wish we knew of PANDAS/PITAND 8 years ago. In my opinion, I would start your child on abx right away and see if there is improvement. Better to be safe ... I bet your gut feelings are sending you the right message ... Good luck!
  21. Why keflex - not sure why our ped uses keflex instead of amox, zithromax, aug, etc ... that is the abx of choice for our ped when treating PANDAS. Maybe she feels is it gentler on the digestive tract. I think our son weighed approx 70 pound a year ago when he was 8 - he is very tall for his age.
  22. I think I have concluded that mono was our trigger for both kids. Our youngest son 8 (no PANDAS diagnosis at the time) started some tics Jan 2010 - first sign of PANDAS - no sick symptoms at the time (ie. sore throat, etc). We took him for step and mono test. Strep was neg but mono was positive. We started him on 500 mg twice a day of keflex after seeing tics for about 4 days and tics stopped in 3 days. We continued keflex for a full 30 days and then stopped. Since then, we have seen 2 other flare up of tics, but we start keflex immediately (same day) and tics stop in a day or 2. He is the easy one. Older brother had undiagnosed PANDAS for approx 6 years (I think mono started it all) and we are still trying to heal ... So yes, IMO mono can be a trigger ... We have one fast recovery and one that we are still working on with major ups and downs all the time ...
  23. We're kind of in the same boat right now - we've been in a backslide the last 3 weeks and we have not seen any improvements in symptoms when we increased abx doses. So, we are trying clindamycin. After 24 hours on clinda, tics were much worse (constant) and DS 12 was very anxious. We are 48 hours into it now and tics are still very elevated, but he doesn't seem as anxious. I don't know if we are seeing herxing or not, but I am hoping we are. If this is not herxing, we don't know what to do next. Logic makes me think increased symptoms on a stronger abx has to mean something good is going on. Here's to hoping we are both seeing herxing ... thinking of you and hoping for good results ...
  24. Hearing your reply helps me decide we need to test for possible myco p. I know there was terrible respiratory illness with myco symptoms going on around here in Oct/Nov, but DS never seemed to catch it. Maybe he did catch, but did not show symptoms just like he is with strep ... Do you happen to know the name of the test to indicate myco p? Thank you for your info and I hope you also see improvement soon with the biaxin. We have not tried that one yet ... My thoughts and prayers are with you too
  25. Thank you for the benedryl suggestion. I've read about mycoplasma, but haven't seen any symptoms in DS. Any feedback on whether PANDAS kids have tested positive without any mycoplasma symptoms - kind of like testing positive for strep without symptoms?
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