Everything posted by PANS-mom
PANS-mom replied to rhyanen's topic in PANS / PANDAS (Lyme included)My son takes 250 mg a day and 500 a day when he has a regression. He has taken it for over 2 years now. My oldest daughter takes 250 mg a day and my youngest takes 4 liquid ML's a day. Without the Zithromax they are all a mess. With it, they do great. It is hard to process that they are taking long term strong antibiotics. But without it they don't have a good life.
PANS-mom replied to Bttrfly1's topic in PANS / PANDAS (Lyme included)Yes, it does run in families. All 3 of my children are on long term Zithromax. This is what I would do if I were pregnant. I am not a doctor. But I am pretty experienced in kids with auto-immune disorders, so here goes. 1. Eat organic food as much as possible and avoid sugar as much as possible 2. Take lots of fish oil and your pre-natals of course 3. Don't use chemicals while you are pregnant, and for cleaning the house use white vinegar 4. Make sure your hand soaps are fragrance free 5. When your little one is born, breast feed if you can while staying organic, and if not, use Pregestimal 6. If possible be dairy free a couple of weeks before you give birth and then for the first year you are breastfeeding 7. Lot's of smoothies with greens in them!! 8. Keep up the "clean" living and do slow or no vaccines (check with your dr about this) and your little one should have a good chance of avoiding it. Good luck. I know how hard it is to have children with auto-immune issues. But all 3 of mine are doing fantastic right now. I think that "clean" living definitely helps and you get used to it pretty quickly.
7 years of PANDAS
PANS-mom replied to AmbersMommy's topic in PANS / PANDAS (Lyme included)I am so sorry of you and for your child having to go through this. If my son stops taking the antibiotics (Zithromax) he gets sick again. See if your daughter can stay on them long term and ask for tiny doses of clonidine to help her sleep through the night and help her anxiety. Also, Prozac has been very helpful too. I'm sorry you are at your wits end. No one will judge you if you need to get extra help. Also, being a PANDAS parent can cause PTSD in parents so don't feel bad if you need to get help too. I needed to go on Prozac myself to help manage the stress of it all. When you feel better, everything is better. I am sending hugs and strength your way.
My son w PANDAS is much better – what we did
PANS-mom replied to MC2's topic in PANS / PANDAS (Lyme included)This sounds very, very much like what we went through. My son was 10 at the time and he was out of school for 3 months. Now he is 12 and doing much better. He is doing well in school. He takes fairly high doses of Zithromax, 500 mg 3x a week. Right now he is taking 500mg everyday for 10 days as he has a viral cold that is aggravating his immune system and he has been getting some tics and symptoms back. The larger dose of Zithro always helps him though when he has a setback. Thank you for your detailed account. I am going to ask his pediatrician about the HD Solumedrol infusion. I wrote a blog about our journey with my son's panic (turning out to be PANS), starting Christmas day 2015. https://10-year-oldwithpanic.blogspot.com
PANS-mom replied to Nire's topic in PANS / PANDAS (Lyme included)This sounds like PANDAS to me for sure. It is genetic so it makes sense that both kid have it. All 3 of my children have PANS (although my girls didn't have a sudden onset) are on Zithromax as their mycoplasma levels are high, and Zithromax works best for them over Amoxacillin. Anyway, find a pediatrician who will help...asap!!! Mama is usually right. I Worte this blog about our journey with our son's PANS which is now treated and he is happy and back in school and doing well again. https://10-year-oldwithpanic.blogspot.com
Adult with PANS
PANS-mom replied to a topic in PANS / PANDAS (Lyme included)Hi Ophelia, I also came down very suddenly with PANS when I was 27 years old. I am now 44. I didn't know what PANS was until recently when my son and daughter were both diagnosed with PANS by their amazing pediatrician. They both had very high mycoplasma levels and both responded amazingly well to Zithromax. So I had my (past) mycoplasma levels tasted and they are also very high. My own doctor doesn't even know what PANS is so I am currently looking for a new doctor who does and who can prescribe me some Zithromax too possibly. I have been trying out different SSRI's and supplements for years now. The first month of was a cocktail of Ativan and very high doses of Zoloft (don't recommend the high doses of SSRI btw...just small doses). I currently am doing well on Prozac 20mg and very small amounts of Buspar. I also take very small amounts of ADD medication which helps me to focus and get stuff done during the day. It is possible to get past this. Just be very vigilant with finding the right doctors and researching supplements to help.
My son has been on Zithromax for over a year (500mg 3x a week) and his Dr. wants him to be on it until he has and adult immune system. We have discovered that when he goes off the antibiotics, he starts to relapse.
PANDAS and LYME in siblings
PANS-mom replied to hawaiijenni's topic in PANS / PANDAS (Lyme included)All 3 of my kids have autoimmune issues and mitochondria disorders, which makes them susceptible to inflammation an also my two oldest have reactions to vaccines. My oldest has autism and my brilliant middle one has PANS and we are going to start a round of Zithromax for my youngest because she is perpetually tired for no reason, has been since she had pneumonia in 2014, and she tested high titers for mycoplasma. So this stuff is definitely genetic and is a theme through siblings. Good luck with all of this. It is very difficult to constantly deal with kids who are struggling. But at least there are answers and help out there. I have high mycoplasma titers too but my own doctor does't believe in treating past infection with antibiotics. So I treat my symptoms...not the cause at this point I just read a new amazing report that vitamin C infusion mixed with steroids can cure sepsis by boosting the immune system and bringing down inflammation. I am going to talk to our pediatrician about this in a couple of weeks at my youngest next physical.
PANS-mom replied to Ilovemy3babies's topic in Attention Deficit DisordersMy son is very, very sensitive to Clonidine. He was prescribed a half of a 0.1 Clonidine tablet, but we soon figured out that he needs less than a quarter!! We give it to him at night and any more than less than a quarter, he couldn't get out of bed the next day and was a complete zombie. We gave it to him once during the day and he couldn't function for the tiredness. The small amount we give hime now, however, is very helpful for his anxiety and tics. His doctor is surprised that the trace amount does anything at all but that just shows how sensitive my son is to this medication that is actually very helpful for him.