hugs2day

My kids also had hallucinations at onset. My youngest saw whites spots in front of his face like fireflies, he called them ghosts, he walked around swatting at them and talking to himself, truly looked like he went insane overnight. It presented at first PANDAS episodes when he was not on Azitrhomycin, the hallucinations faded after a few weeks of starting the PANdAS protocol with Azithro and lots of supplements. My oldest also reported seeing ghosts and lasers coming out of the walls until treatment with antibiotics started working. Neither of my kids have had IVIG or PEX, but used high dose antibiotics initially and a lot of supplements. I just comforted them and told them that they were safe and there brain was playing tricks on them and that we were actively seeking a cure and they would be better soon. I also gave them phosphorus 30c and told them this remedy would take away the ghosts. It comforted them and treatment did relieve them of this burden. One of my biggest fears is that hallucinations will come back, your right its as though your child is stolen and your left with this new person. BTW I noticed Ibuprofen helped them and also clonodine early on before I had a PANDAS doc on board. After the antibiotics started the healing began quickly including the hallucinations. My son also gets auditory sounds in exacerbation that occur but they don't scare him and he rarely complains of this anymore.

Our DAN prescribes singulair granules packets. Singulair granules has no fillers, but if you take the chewables they have aspartame. I used the packets on my kids and I didn't see any side effects one way or the other but stopped using them anyway because of what I read on this forum. The local ped allergist recommends allegra, I tried it out and saw no negatives. I also use Benadryl sometimes for allergic reactions, no choice, I do not see that Benadryl causes any pandas symptoms. As a matter of fact it seems to bring a little relief to anxiety. I did see crazy hyperactivity with claritin and agitation with zyrtec, but it could have been pandas symptoms that were not under control at the time, it was quite some time ago. Histamine issues are confusing to me. Allergy season is rough. I also use quercetin on my kids, I thought it was supposed to take down inflammation systemically and is a pre-cursor to glutiathione.

For some reason my first post didn't save, but I just wanted to share my support for what your going through. My husband and I work full time and had to start working opposite shifts because of the kids illness. I have intermittent FMLA approved at my work for emergencies. It protects my job and my sanity as I never know when a loose tooth or strep is ready to wreak havoc. I know this advice may seem trite in the early days I had a tough time feeling like anyone got how hard my life had become, but it really does help to take it day by day and enjoy the moment. I stopped planning too far in advance, I also leave my youngest at home when my older son has an assembly, or cub scout event, etc. I had a dream of a perfect family and my expectation is that we would do everything together, but we had to make a new normal for ourselves, new routines, and just simplify life to deal with this chronic illness. Don't get me wrong we still have a lot of fun, but I try to keep realistic expectations so as not to be dissappointed. Through it all we have somehow found a sense of humor too, my dh and I have taken 401k loans, our paydays always has a huge supplement bill, we pay cash for consults and we just joke through it all saying "its just another red letter day". It will get easier, I promise you. Give it time and make the necessary adjustments and let yourself off the hook she won't remember she missed an outing she will have plenty of her own in the future in which she is the center of attention. Your life will get easier, I can assure you of that. In my darkest hour I used to go to work with tear stained face and was a walking zombie, honestly that is a faint memory know and I am still dealing with PANDAS with my youngest fairly often. PM me if you need advice on getting FMLA.

Liquid dye free ibuprofen might be easier on your son's stomach with lots of water and food. My son had terrible stomach pain when in pandas episodes, but treating aggressively helps him get through quickly. PANDAS always gives my kids gastro symptoms if in exacerbation. My oldest usually gets gerd I treat with pepcid or alka seltzer gold. My youngest severe constipation much like you described your son. Oxypowder works great. I have treated clostridia with flagyl and it helped tremendously. In my experience with my son I always thought clostridia smelled like ammonia and metal. A stool test from a specialty lab will help figure it all out, but meanwhile you could try SAch B. Sacchromydes Boulardi will help with yeast and clostridia problems and is a good probiotic in general.

Is he back on antibiotics? Probiotics? Pepcid or alka seltzer gold for tummy pain? It may not be the antibiotic that gave him stomach pain, strep can give you stomach pain, PANDAS for some (including my kids) brings gastro problems of all sorts even GERD. Supplementing magnesium citrate will help keep bowels moving, probiotics will help tame down the gut issues, and pepcid may help overall as well. Your sons panadas episode is very similar to my kids and I have to keep them home and treat aggressively with many things #1 increase antibiotic and probiotic. #2 then treat the co-morbid symptoms. I hope your son can find relief soon. PM if you want some more ideas on supplements I have a list I resort to in hopes of keeping them stable and others I use when we see back slides.

Kimflow, My DS7 was hit by chronic strep throat at age 5 and he was on omnicef more often than off and occasionnally amoxicillin. The strep would come back within 7 to 10 days after abx ended. He finally had to have his tonsils out because he could not breathe or eat. snored at night and was clearly miserable. After tonsils came out he no longer had antibiotics because we thought it would cure the recurring strep throat (didn't know about PANDAS at the time) and that is when the most severe pandas symptoms occurred literally overnight. Azithro has been the only antibiotic to help him to date he has been on azithro for nearly 18 months now. My other DS9 found remission with PennVK. Azithro did nothing for DS9 but I stuck with it for nearly a year before another dr. switched him to PennVK. Just letting you know if amoxicillin doesn't give your son relief and help put him in remission pursue another type of antibiotic. You can still use OLE in addition to the antibiotic just administer it away from probiotic.

I give both. OLE 500 mgs away from probiotic usually do midday several hours after zithro and 2 hours away from 2nd dose of probiotic. First time we gave it to our DS7 we saw him calm down hyperactivity had been really bad so my DH and I pursued it and it has been about 4 months now. No ill side effects to report. If you find out about any contraindications please let me know. Our MAPS Dr. knows that we do it and he didn't have any concerns other than spreading the dosage away from probiotics.

Dr. Anju Usman in Illinois . Just met her at a conference and her knowledge and background is very comforting and impressive she know PANDAS/PANS and LYme and autism. She treats all chronic illnesses. Look her up she has excellent credentials and also pioneers biofilm protocols. I don't live near there but thinking of traveling to see her. Good luck. quote name='minimaxwell' timestamp='1332887005' post='135832'] Hope you don't mind me posting here. My DD17 has recently been dx PANDAS. So confused about vit and supplements. thought perhaps a DAN Dr. could help us. The only one I found was Dr. Carol Englander (sp?) . I have read mixed reviews. Thanks, Tiffani

I'm reviving an old post. My son has autism and he was 15 months 1 month after his MMR when he started getting strange rashes. Review this website: stopcallingitautism.com and you will find this is very common with kids that have autism. PM if you want the SCIA protocol in a PDF file.

Hi, I am new to LYME research so please humor me, but what are the symptoms of mold exposure? I noticed my youngest had a PANS flare when the wind started last month I finally got that under control and just this weekend we turned on the air conditioner for the first time, hit 80 here and he seemed to be agitated and mild intrusive thoughts. Also had dark circles under his eyes. After I read your post made me think it might have been the central air conditioner. I have an ecoquest air purifier it supposed to kill mold but the ozone smell is awful so we rarely use it. You also mentioned a gene, can I be tested for that?

I don't know about Luteolin but I have read many times that celery reduces brain inflammation. I juice celery and kale into my sons pasta sauce. It's probably not big enough of a dose to bring on substantial healing but my husband and I make every effort in hopes it will all add up. LLM you mentioned celery extract. I would be very interested in that, please share if your doctor can shed some more light on that supplement. Thank you.

Thanks fightingmom. There is definite benefit to addressing high histamine. Here is an article from Dr. Mercola's website on how allergies increase histamine which in turn increases nitric oxide (at high levels) which in turn has the capcity to kill neurons and cause problems in the central nervous system. Therefore, addressing histamine can help mitigate this vicious cycle. http://articles.mercola.com/sites/articles/archive/2000/03/12/reducing-nitric-oxide.aspx Dut ..is that 1st and 2nd generation? i think 2nd is ok???? i hope you can find link. thanks for the heads up

Same here, my oldest was prescribed pepcid by neuro to protect stomach. He gets a lot of relief from it and keeps worries away. He refers to his anxiety as worries.

My 9 year olds tics increase with claritin or singulair, but he does very well on allegra. Also he uses the nasal wash pediatric saline washes up his nose and he says that gives him the most relief. Pycogenol and Isoquecitin I also give daily, mix one capsule of each in small pear sauce or apple sauce. It does seem to help. Pollen is very high right now and he is doing well.

To treat the gastro symptoms and get his motility going we did the following: Sach B 3billion with culturelle 10billion first thing in am. High Dose Vit C 1000 mg twice daily. Mag citrate 2 oz of the bottle liquid kind you buy at the pharmacies, this is the big guns. a lot of electrolyte water with soluable fiber (trufiber). Also avoided ibuprofen for two days he did okay. Aloe Vera Juice/ acetyl l-carnitine mixed in smart water which has electrolytes. I did this to hydrate because the mag citrate pulls all the water to intestines. I continued giving enzmyes with each meal and pepcid one time daily and alka seltzer gold in the afternoon to address gerd. It was a lot of stuff in one day and repeated the next day. Encouraged exercise and trampoline. It took until the evening to get a bm. Then the clean out began to come next morning after that he had been backed up for 3 days. This protocol made him regular it did not even cause diarhea. He has always suffered chronic constipation which I know think is lyme or strep in his gut, but that is another conversation. When his tummy looked flat again and he was happy and no more bloating and gas I went for the charcoal clean up. He is currently doing well and BM's are regular for him. I addressed the GERD with pepcid and alka seltzer gold, the gas with enzymes, the no motility with aloe vera/acetyl l carnitine,vit c and the big guns was the bottle mag citrate only used 2 oz. Normally I don't use that liquid I use natural calm but it wasn't doing the job for this. The probiotics and sach B I give to him normally but I increased the dosage to 2'xs cuz I thought he had bacteria or yeast overgrowth due to adding the 2nd antibiotic. It worked this time. I find that I keep having to change things with him. What works once or twice doesn't always the next go around.

My youngest son has had this exact leg attack at night about 4 times in the last year. I have asked every doctor, the forum and even the RLS website what to do. I have heard iron, magnesium, potassium deficiency, RLS, neuropathy, lyme, and I really don't know. If you find anything that helps please pm me. He seems panicked when it happens and I have to rub his legs and scratch his legs and give him benadryl to calm down and get back to sleep. He describes it as tingling, itchy sharp pain that travels around his calves mostly, thighs too, but calves primarily. I describe it as an attack because of the way he responds to the pain and the length of the episode is like 20 to 30 minutes. I do more supplementing now of magnesium and vit-d. He has not had an attack (knock on wood) since about November so maybe supplements are helping not sure.

yes, infact did Charcoal last couple of days after my son added Bactrim to azithro. The first day got a little scary and gastro symptoms started GERD, Constipation, bloating, gassy, pain. He was clearly going through herx because the agitation and intrusive thoughts were trying to start. So I treated the gastro symptoms aggressively and once I got his bowels moving good, I used charcoal 2 hours a way from anything. Worked great, he has been so calm and together the past 36 hours. I only used 1 capsule a day. He's 7 and sensitive to most anything I give. So I only used 1 capsule but it seemed to make a dramatic difference. He is very calm for him. Have you ever tried Charcoal? I am considering trying it to decrease herx..?? I know it has to be timed carefully.

Lee Silsby Pharmacy here too, all supplements are clean no fillers, and the site is friendly and they carry a wide variety of items. The site is awesome and the shipping is free for orders over $40.

It looks just like water and its tasteless so most of the time I put it in water. I keep it in the fridge so its cold. I have also done it as a shot before too. Its one of the easy supplements to get in them.

It looks just like water and its tasteless so most of the time I put it in water. I keep it in the fridge so its cold. I have also done it as a shot before too. Its one of the easy supplements to get in them.

George's Aloe Vera Juice and it has no taste. Supposed to help the inflammation and healing in gastro track. Not easily absorbed in intestines so it also helps with motility and getting things out. 2 oz worked well in the beginning now I am finding we need to do several times a day. Hugs2day- pulling up this older post for a question - what type of Aloe Vera juice do you use? Someone just recommended St George's brand to me. Looking for a brand that doesn't taste too bad. Do you use it to keep the bowels moving, or for another reason? thx

Since your son is back sliding you might consider taking him back to his daily hd antibiotic. My son stays stable with this protocol. Its a long story but after many many months it is clear my son is antibiotic dependent and has other co-infections. I am learning more and more and adding more supplements all the time with good results. But I cannot lower his antibiotic or symptoms come back. Not to scare you my only intent is to share, but I talked to another doctor recently in regards to my son and she suggested since azithro cannot be lowered successfully it was time to look at lyme/bartonella as possible infections. I believe she is right. You may want to peek at the lyme forum as both of these forums have helped me tremendously in getting the right treatments for my children. Good luck to your family and son, I hope he finds relief with the right combination very soon.

For months I wanted IVIG for my PANS children and could not get it approved, now the neuro treating PaNdas is offering it and telling me he has good success getting it approved, but I am apprehensive because I have added LYME to the diagnosis of PANS. What is the opinion of this forum and especially the opinion of the LLMD's you all see. I am still waiting for first appointment all I have in my arsenal is my own research which is conflicting on IVIG. I have read the old... oldest posts on the PANDAS forum and it seems quite a few families used IVIG prior to realizing LYME was an issue and outcomes vary. Please share your experience. Thank you so much.

PS... its 5ml on thin layer of skin at bedtime. I put around ankles. I started it at the same time as a lot of other supplements and my son improved but I cannot attribute to what helped him so much at the time, but clearly it is not hurting.

yes my son uses for nearly 1 1/2 years I don't see a difference but it is supposed to be immune modulating so I continue to use.