hugs2day

My son's (9 year old, typical) tics also go into remission if he has been sick vomiting its an overnight cure but never lasts more than a few days. He also takes pepcid not pepsin. Are these two supplements the opposite? I have never heard of betaine (pepsin) but I am going to research for my other son (7 year old) that has never thrown up in his life and also has autism and major gastro issues.

My son has the severe itching and is being treated for BART with Azithro/Bactrim Difulcan, Flagyl The itching is worse before bath, but is improving with the following: Magnesium Oxide and Mag Citrate combo Activated Charcoal Organic Lotion w/essential oils all over body. (target in babies section) Sometimes OTC anti-itch cream. Sometimes I rub organic olive oil in the lotion for more moisture. Benadryl after bath (helps him) Electrolyte water Vit D 2000 iu daily Vit C I think the magnesium helps a lot. As long as his bowels are moving the itching is mild if he gets constipated the itching is unbearable. Sorry I wish I had more advice for you. I know the itching is a real source of pain for my son. I know that when I see that symptom go away we will finally see healing. He has been itching severe for 4 years only recently getting better.

THANK YOU. I am also using Enzymedica. Didn't know about Chollera. Is chollera used for detox support?

I am new to lyme treatment but I having some minor success with cleaning up my son's gut with enzymes. Now I am reading about enzymes that target and break up biofilms. Sounds too good to be true, but I think I am going to make the expense and go for it. Has anyone used a protocol targeting biofilms using enzymes? If so, did it help? What's the herx like? Please share I would appreciate any information. Thank you.

Kim, Sorry to hear your son has relapsed but I would second the suggestion to ask doc for the rifampin back asap. Also I do think this is related to the procedure. When the anesthesiaologist (spelling??) puts the tube down your sons throat for T&A the bacteria in the throat is pushed to the stomach. I was told this by our anesthesia doc when my son had his procedure. He actually warned me of this stating strep lives in the throat and that is why my sons throat needed to be clear before procedure we had to reschedule a couple of times. My guess is the iv abx was not the right one to hold back the bacteria or the immune response. Take care I hope things turn around quickly.

my oldest son is similar to yours has PAndas/PANS and lyme with main symptoms of tics vocal & motor. The tics went away after switching from Azithro to Penn VK (so did the horrible intrusive thoughts **ugh). The tics only (no ocd) came back 3 months later with loss of a tooth. Then we added omnicef and they subsided in about a week. Then tics came back with sinus infection recently I added xclear saline nose spray and sach b in addition to the daily custom probiotics he was taking. He seems to have gut issues now too. I have come to the conclusion he is PANS and is triggered by inflammation, virus, and bacteria. PANDAS dr. wants us to try steroid burst but we just added the omnicef again to the PENN VK so I am giving that a chance now. My main focus is too clean up his gut per llmd. He is able to go into remission for months at a time when healthy. I am starting some new supplements with him trying to build the immune system. Are there any other health issues lingering around that need to be addressed like the gut? I was overlooking that piece. Good luck.

My ds7 had T&A at age 5 after 9 months of chronic strep and he couldn't breathe or eat anymore. He enjoyed 6 weeks of no antibiotics and feeling great and then had overnight onset of the worst pandas symptoms listed on Dr. K's website. It was awful. They are a source of infection just make sure he has abx on board before during and after do not give up the antibiotics. like LLM stated the T&A is unfortunately not the end of the road. On the flipside of that experience with my younger son is my older ds9 he still has tonsils and is in remission with abx alone. Its a tricky sneaky disease... I cannot make sense of it. Good luck and best wishes whatever you decide.

Hi Kim, Foot pain was common with my youngest DS7 for years (started around 3) as he had pandas and now I realize Bartonella and it went untreated I didn't know he had bartonella until after the pandas episode and a year of treatment with Azithro. But a couple of months ago we added Bactrim to his daily zithro to start treating BART and the joint pain is rare now, but he has lots of itching. Activated charcoal, a long list of supplements and milk thistle seems to help I see no difference with epsom salt baths but I give them to him anyway. Mag oxide helps to keep his bowels moving and that seems to detox him as well. Ibu helps. He does seem a little wobbly in the morning I have read BART will give heel pain. He also developed a lace faint rash after starting bactrim. He uses Flagyl on the weekends. He looks better than he has in a long time. More energy, more speech but he still gets anxiety and increase in ocd with loose baby tooth. I read that lyme lives in root of teeth or something like that also read that strep lives on teeth. So the teeth thing is still a mystery to me (lyme or pandas or both or unknown pathogen)but that seems to be his most common trigger when we have set backs. The joint pain used to be severe like you are describing. I would make him comfortable and treat with hot water bottle, elevated feet/ ibuprofen, etc. Sometimes brushing his feet helped too and massaging and also rubbed arnica into his feet. I also use LDN transdermal on the top of feet. I still see joint pain in him occasionally seems it moves around now sometimes knees sometimes hips sometimes heels but no where near as severe and not very often. I feel for you and your son, I know its tough with autism/ pandas and now lyme. I am in the same boat. email me if you like anytime. Your a great mom and I know your son is going to improve so quickly with your amazing efforts. Your really moving fast and so on top of his care. Take care. I'm sure others will have some more longterm experience, advice and hope for you soon. Stay strong!

My son experienced this as well and it was due to a sinus infection. He was not symptomatic of a sinus inflammation/infection but due to the tics increasing I took him to the dr. He was put on Omnicef and had to do two rounds a total of 14 days by day 8 the tics were gone. I also started allegra at the same time and will continue to use throughout the summer due to wildfire smoke traveling into our area. PS I also give him many supplements daily and monitor his diet. It sounds like you do that already. Good luck.

OmG you succeeded! you provided a lot of hope! Thank you!!!!

Does he have any loose teeth? That can also be a cause of exacerbaration. If he does that would be a big clue, it always is for us. Zithro is what keeps my son stable and I increase the dosage during exacerbations due to strep exposure or loose teeth.

My kids react to teeth cleaning at the dentist. I no longer take them as often and I increase abx before and after when they do go for thier checkups. The oral bacteria in mouth is made up of lactobicillus and strep mutans. Try mouthwash and toothpaste with xylitol like Spry. Also if the dentist will give you a prescription you can get a mouthwash like peridex (spelling?). I would get the other cavity filled because it continues to put out bacteria in the mouth. Its a catch 22 and may require higher dose antibiotics for the short term. Sorry to hear of the relapse but that has also been my experience. Best wishes for a speedy recovery.

My DS9 has been taking PennVK daily since late January. It has done wonders for him but the last couple weeks he is very swollen and today DH and I noticed he is getting a moon face. I thought he was having gastro problems so his tummy was bloated but those really resolved weeks ago and was not that severe and that wouldn'g effect his face. I don't think. Tummy is bloated and face is puffy and round. He takes daily custom probiotic 11 strain and occasionally sach b. He has not been on Steroids since Nov. 2011. I know that is a common side effect of steroids but he has not taken any in over 6 months. I called the neuro and they called in some bloodwork to quest we are going after school today. Have any of your kids experienced this side effect from daily antibiotics or Penn vk?

Not sure about lyme/bartonella, but you did suspect your daughter may be on the autism spectrum. Clostridia is very common in children with autism and is treated with Flagyl or vanco. It is persistent and tends to be a vicious cycle will come back in my son's even with high quality probiotics and SACH B. SACH B will help tremendously though. You can test for clostridia through great plains labs with urine test.

Also had success with Azithro/Bactrim combo. Did wonders for my son. You mentioned teething so I just wanted to share that when teeth erupt they release dental carriers such as strep mutans and that can also trigger oral bacteria and pandas. You might have your kids brush and rinse with Spry/Xclear products. The strep mutans eat the xylitol because it is sweet but is actually toxic to the strep and therefore kills oral strep. They make a toothpaste and a rinse. Best wishes for speedy recoveries.

I think a second antibiotic (10day )might help and also dose Ibu at treatment dose. That always helps my kids. Your son is on Augmentin you might ask the dr. for a combo it seems to help a lot of our kids when the flares are so severe. Azithro is sometimes used in conjunction with Augmentin to calm things down. Also, we used clonodine also but it doesn't really help during exacerbatiions. Are you also using melatonin? It not only helps sleep and mood but it also is an antioxidant for the brain. Very good studies to support that. Does he have allergies? Red ears indicate allergies. When my son was at his worst I sent his older brother to his friends for a sleepover for a couple of days while me and DH got our son's symptoms under control. It was a Godsend. There will be answers but I think they may lie more in modulating the immune system and less in psych drugs. Praying for healing for your family.

Yes it can still be PANDAS. Pandas is a clinical diagnosis and the best test is response to treatment. If your daughter responds to azithromycin or another abx favorably then you are on the right path. Not all kids mount titers to the normal gamet of tests. It's great when they do because drs' are more willing to treat and insurance is more willing to pay, but normal results does not rule out PAnS or Pandas. Best wishes for your daughter's recovery.

my son had tonsils and adnoids out in the summer and had a good recovery. Got strep at start of school year in late September and it was one of the worst episodes he ever had. He was oral amoxicillin before and after surgery. Good idea to get iv abx and stay on oral abx after. Good luck.

It is a trend with my kids when they have PAnDAS flare they get gastro symptoms; constipation, bloating, gassy, stomach tender/pain, GERD. Since it consistently happens with PANDAS flare I can no longer attribute to other issues. There have been no dramatic changes in diet or supplementation. I think for them its part of the immune response or the systemic inflammation. I am treating the symptoms but the usual stuff like magnesium citrate, pepcid, sach b, enzymes, alka seltzer gold, and other stuff is not working it never does until the symptoms start to wane. For my oldest ds9 who is typical his gastro symptoms will subside once he gets through the flare and goes into remission. My youngest ds7 whom has autism will improve dramatically but still have some lingering symptoms. I feel like the symptoms are related to pandas bcuz my typical child gets the symptoms also. I asked Beth Maloney if Sammy experienced gastro symptoms she said no. Do any of your kids have gastrointestinal symptoms with pandas flareups?

For the sleep you might try 5htp, gaba and magnesium in the evening ask your doctor for the dosage. Also you can increase your melatonin to 3mg according to our doctor. My son has autism and used to have low vit D but I noticed a lot of improvements after supplementing VitD for a few months, its in the normal high range after 9 months. Also, when sleep is a problem I sometimes add Benadryl and he looks great the next day so I know he has high histamine. I'm sorry to hear your DD is not getting the relief she should you sound like you have been at this a long time. Maybe research how to offset the high B6, I know when I tried supplementing B vitamins my son could not sleep, so that could very well be part of her sleep issues. The clostridia is another issue I have faced with my son. We used Flagyl a couple of times, but currently he is doing well just using Sach B 3 billion a day. Haven't seen the clostridia return, just did a moats through great plains and he was fine, but always watching out for clostridia it does cause severe OCD and agitation with my ds7. Also the Sach B helps with yeast issues too. I hope something gives for your DD soon.

What supplements are you trying? Supplements made a huge difference for my son. He was diagnosed with autism at 3 and pandas at 5. He has a long history of infections and I do suspect lyme/bart. Antibiotics are now critical for him but prior to abx, every supplement I added gave great benefit including cholesterol. You can research that therapy on http://www.greatplainslaboratory.com/home/eng/tourettetics.asp

PANDAKID11, I am so sorry your son is so sick. How long has your son been on antibiotics? Which one? I know at one point you mentioned he would not take the antibiotics because his stomach hurt too much so I was thinking maybe you need to give it more time or maybe needs higher dose. Can't say for sure. He does sound like he has PaNDAS but maybe other comorbid conditions as well like EBV. The stomach problem is puzzling. My kids get stomach problems but they pass once the PANDAS symptoms have been managed with antibiotics. Does he vomit a lot or just have nausea? Some other post yesterday mentioned a form of encephallitis that had symptoms of vomiting. I know your son saw an LLMD did he test for viruses and infections? Yeast? Clostridia? There seems to be a lot going on with your son for him to be this sick since November. I hope the doctors keep looking and figure out something soon. Also by any chance is he getting in his 12 yr molars, the bacteria released during tooth eruption is partly strep mutans. My kids react to that dramatically. So much to think about I know but if you would like to please share a little bit more about what his current treatment plan is then maybe some more experience forum members will have some suggestions. Take care.

I have one similar it puts off a very strong ozone smell. We use on low setting very high on pot shelf. Supposed to kill mold as well. Ecoquest is the one I purchased. Hope its working it runs daily.

Hate teeth! Yes we do have a couple of docs including a DAN. They were already on treatment dose of antibiotics but the loose teeth still caused problems. Tummy problems too. Yes, I agree about Flouride. Tim Buie, excellent gastro dr. said in a autism seminar I attended "flouride is an irritant for the gut and bad toxin". Since then I buy xylitol toothpaste or Branaam its no flouride, no aluminum, no sls, also contains xylitol. Also, flouride water gave my son spots on his teeth when he was 9 months old. I used to buy the baby flouride water and he got the spots so I stopped and have avoided flouride water since. He has methylation issues so floride no good for him. I will let them get floride treatments at dentist but I have them rinse immediately after. And a couple of times a week I have them brush with floride and rinse really good. I still think we need floride for teeth but not everyday for kids like mine and I am picky about which toothpaste I allow them to use with floride.

Well my oldest DS9 enjoyed 3 months of full remission and he now has eye rolling, facial grimacing, worries, intrusive thoughts, etc. He told me himself this time that PANdAS was back and making him look crazy. I asked if he has a loose tooth and he showed me a tooth that is very loose. I knew my youngest DS7 has a loose tooth as well and I have been dealing with his on/off switch for over a week. He has been holding stable most of the time because I added a second antibiotic but I can tell by his eyes we are tetering on crisis. His should be out this weekend. I have them both brushing with hydrogen peroxide rinse in addition to their toothpaste. I also added Xylitol Rinse by Spry and the gum. They are both on treatment dose antibiotics so I guess I will try to attack the strep on teeth topically. I called the dentist to ask for Peridex but dentist refused saying that it is only prescribed for mouth infections. Any other ideas? I need to send my husband to get supplies asap as we will likely be homebound for a awhile. Teeth are my kids worst exacerbations! I sound panicked and I am my oldest is almost done losing teeth but my youngest is barely beginning. I can hardly wait for the tooth fairy days to end. Sad but true.