hugs2day

My 9 year old has been doing very well since JAN with PENN VK. I forgot to give him his second dose on Sunday night first time ever and he woke up at 2am with sore throat, sick stomach and high fever. Seems like strep swab says no. PANDAS is creeping in but a new symptom has arose that we have not been faced with before. He says his brain keeps blacking out and he forgets where he is for a split second. Scares me to death have appt this afternoon with pediatrician. Has anyone else heard of this symptom? Please share if so, Thank you.

S&S, Lots of good suggestions I can research. What is a homeopathic drainage remedy? Will it help the swollen lymphnode behind his right ear? I would love to hear more if you could please. Thank you.

Thank you all. I do think the itching could be parasites as well since this was a major symptom prior to adding the bactrim and flagyl does help after we pass the second day of die off. Also he has the chronic constipation for years since infancy and keeps getting worse not better. What complicates matters is that my son has autism so he has difficulty articulating his symptoms. His older brother helps because they do share some of the same symptoms and he is wonderful at giving me details on the symptoms. For binders and detox: I use charcoal daily 2 hours away from all abx and epsom salt baths nightly. I believe high dose vit c, pycogenol help detox and I rub LDN cream and Glutiathione cream on his ankles nightly. Clearly its not enough. I also put aloe vera juice in his water daily 2 oz its supposed to detox and be an antioxidant. He has slow slow slow bowels currently have him on a protocol with miralax daily, dulcolax script, and his usual magnesium. Gastro doc said try miralax and dulcolax briefly because she felt the amount of magnesium I was giving him would be harder on his kidneys and liver than the lax products. So I reduced the magnesium to just a 50mg chewable with b6. I was giving 500mg of citrate or glycinate. I have my mommy intuition always going back to thinking he has lyme in the gut resulting in lyme gut palsy. Just my own theory DAN doc, and LLMD do not give much credence to my theory. I am not versed in tinctures yet and LLMD said we are not there yet. So if you have any product ideas please advise. I also give olive leaf extract daily and always noticed this has helped. The mornings are tough until all the dosing starts working then he usually has a good day until the evenings when it gets tough again as he gets tired. Just itchy, grouchy, rigid, doesn't want to go anywhere but once we get him to go usually has a good time unless he sees a baby he anticipates crying and starts covering his ears. I might try putting headphones on him with nano and see if that will provide comfort for our public baby crying situations. Thank you all for your support.

I read about another child having this and they used a beta blocker. It might be worth asking your doc about a beta blocker. I do not know the name but I think I have an old email will look for it for you.

My son is finishing 3 months of LYME/Bart treatment. The list is long on supplements and detox but here is what the abx is: Azithro/Bactrim/Flagyl Intially great things were happening but lately the sound sensitivity is horrific but unusual. He will scream as though in pain or distress if he hears a baby cry. I literally have had some public situations in the past few weeks where I had to rush him out of stores in a panic because he cannot handle babies crying. Yet an ambulance can pass him with sirens or a loud motorcycle and nothing. No screaming. My son is 7 but I read an article once about a woman with chronic lyme that could not stand the sound of babies and wouldn't go anywhere anymore so I have to assume this is lyme. Are we going to past this symptom? Has anyone else experienced this whether adult or child? Makes me worry theses bacteria are getting more agressive the more we treat. The other symptoms that are pretty severe right now are: Itching mostly on lower legs, feet and back and its all day all night very annoying for him. He is exhausted from the itching. Also he is having food refusal which I now believe is OCD I initially thought it was tummy issues, but it is clear to me know its OCD. Now he also has PANDAS from chronic strep infections and since had his tonsils removed. His older brother has PANDAS and is in need of having tonsils removed they are now touching. Both of them have been on longterm abx PANDA care for nearly two years, but they could be triggering each other. I know some symptoms overlap to PANDAS but not the itching, lymphnode big right now behind his right ear and he walks like a drunken sailor when he wakes up in the morning because of heel pain. Any advice to help alleviate pain? I use IBU. Will arnica help topically on heels or pellets? I am losing track if we are moving forward or going backwards because he cycles more frequently now. Sorry for the rambling just need to get this posted asap its already a crazy stressful morning with him.

My son cycles every 7 days just as you described its leaves as fast as it comes on. For him it is 24 to 48 hours sometimes less. Its basically Thursday. We dread Thursday. We do suspect Bartonella in him but he has only been diagnosed clinically by DAN dr. I do notice improvement on the abx combination of Azithro + Bactrim. The neuro says epilepsy also cycles and he is now scheduled for EEG. I really don't supsect epilepsy but I am allowing the test to rule it out. I think I will look up that amino acid test LLM mentioned through great plains. I only noticed the cycle a few months ago as I looked through my journal. Then I pointed it out to my husband and we both started realizing Thursdays. I have not noticed anything with the moon though I will have to start watching that. I have heard of that theory before but never understood it. Does your daughter have gastro problems? Why do you suspect parasites? My son does have major constipation I notice he does better on flagyly. I wonder if that indicates parasites?

A very good dr. suggested to me that if in a flare and things are bad we could try a little bit of benadryl to take the edge off. Not enough to put asleep or drowsy just a little bit. I have done this with liquid dye free benadryl before and it does take the edge off my younger son. Never had to do for my older son. I have never seen bad side effects like some others have by using benadryl, but I have only had to use on occasion on my youngest. The suggestion of Ibuprofen is number 1 always works for both my kids. Good luck to you I hope things get better soon. Hugs.

We use Azithro 1 time daily, but in a flare if we have to increase (which helps) I will give the extra 2ml in a second dose right before the 4pm crash starts. Yes the second dose helps tremendously taming back the pandas beast. I give probiotics first thing in the morning with breakfast and an hour before bed.

We use liquid ibuprofen per doctor less harsh on stomach and I also make sure they take with water and food. Makes me nervous too, but I can tell you PANDAS hurts. Not only does it help with mood as most of us report but it helps with the joint pain and headaches that come along with this disorder. I really feel I overuse ibuprofen but my kids even ask for it. I'm curious to know if arnica would help in the same way, a question for all the homeopathy experts out there? Sorry I know I am not much help with Dr. Frej, but it seems Ibu is a friend to most families. Good luck.

dentist said teeth look good and didn't feel antibiotics would make teeth hurt unless he was on tetracycline which he is not. She said tetracyline gets into bones likes to attach to calcium. She said she can tell he is a teeth grinder and she thinks his teeth are sore because he is moving them by grinding teeth. Maybe even has TMJ. What I didn't like is she said there is no treatment because its not a good idea to use any hardware in mouth like a mouthguard because it effects the development of the teeth. I feel I already overuse Ibuprofen and now his teeth hurt. Also sold me a tube of ozonated toothpaste to fight bacteria in the mouth. I tried to explain the best I could about strep and PANDAS. She got really paranoid when I asked if they could minimize bleeding and be cautious of any procedure that could cause bleeding like flossing. She said won't see your son again until I consult with his doctor to understand this disease.

My son has been on 20 months of azithro. More and more complaints coming from him lately the latest is he says his bottom teeth hurt. They are sensitive. Anyone else have this issue come up with your child? Going to dentist today which worries me since that alone could trigger PANDAS. Double edged sword this disease.

Enhansa helps with inflammation in the body and yeast as well. Dr. can prescribe it and you can fill it through your insurance at Lee Silsby Pharmacy. You can also buy it cash. Enhansa turns everything bright orange or yellow. I have to hide it in food for my 7 year old turns apple sauce bright orange or pasta sauce , but if your dd is good at taking meds she will just swallow mixed with water. Basically will drink orange water. I have not noticed any dramatic results in using it, but I have read numerous publications on the benefits of tumeric and curcumin so I continue use. It cannot hurt. My son is also suffering gerd and has dark circles under his eyes for about 2 weeks now. I was thinking food allergies but now you have me thinking mold. I have been giving pepcid not much help so far. Good luck. I think whether you use Enhansa or cook with tumeric and curcumin it all helps reduce inflammation naturally in the body.

Thank you both for some great advice. I do think its just Azithro aversion because it is making him sick. He will take liquid IBU, bactrim, and even liquid Flagyl which tastes awful, but he sees Azithro and say no yuckie and flat out refuses. Aspartame scares me I used to get the azithro and diflucan compounded without all the junk but now I just use CVS bcuz of money tight. It may very well be a blessing in disguise and I will move him to pills one way or another. Thanks again.

My son is 7 years old has PANDAS and has autism. He has been on 20 months of liquid Azithro since sudden onset PANDAS. He is now refusing to take and I am sure it will be a matter of days before he backslides to the dark days. I need advice. I have tried to teach him to swallow pills before all efforts failed. He is a difficult child. I have in the cupboard Keflex and Penn VK will either of these two abx substitute for Azithro until I can get dr. and pharmacy to switch out liquid and try pills? I just picked up a month's worth of liquid azithro. He has had a lot of gerd lately and food refusal so I know he is having gastro distress. Have any of you ever switched from azithro for awhile due to gastro issues or otherwise with any success? Azithro is his magic medicine. Scared to death after 18 months of progress we are going to lose it all. Please any advice is appreciated. Thank you.

Some very good points I will bring up to the dr.. Today he is refusing food and complaining his throat and chest hurt (heartburn) so bad he will not eat meat and is refusing even his favorite snacks says it hurts to eat. wants to nibble on dry cereal and he is normally a big eater. So I know he is hurting. I started pepcid and will see doc on monday to get more advice. I think he has h pylori. he has all the symptoms. Julia- I also love oxypowder but my son does not swallow pills so I only manage to hide one in his water throughout the day. I can hardly wait until he will swallow pills it will be so much easier. Just briefly. your story resonated with me and I have a few minutes I can reply I see this happen quite often in my practice too. if you have a holistic practitioner or your LLMD they will understand this One can't just force feed the gut supplements for local milieu improvement. those will work short term but need to be combined with neuroendocrine support and hypothalamus regulation support. If not the gut adapts to the supplements and becomes dependent. in cases like your sons, motility issues are mostly due to low tone in the large intestinal smooth muscles and sympathetic nervous system upregulation. Neuromuscular supplements help too. A program to wean the gut off magnesium etc needs to be in place along with a muscle tone builder like carnitine- it needs to be done under the guidance of a health care practitioner. otherwise the dosages of all the force fed stuff needs to be increased as the gut adapts. Adrenal regulation to regulate stress in the gut and subsequently in the brain needs to be in place too. I also don't notice any toxin binders like microsilica, bentonite clay etc in your protocol. Those are important to have in place too. Google Milk Thistle interactions and double check its not cross reacting with your abx as it sometimes can.If yes then thats the reason for additional sympathetic upregulation and you need to substitute milk thistle with other liver tonification remedies. Any new protocol will shock the system into alert and things work beautifully for a while but if its not addressing central regulation then things plateau. Best,

Misty, My son suffered 9 months up and down while on daily full dose azithro, then in January neuro insisted I give PennVK a try. I was scared to death because I understood azithro to be the best and did not want to give it up for my son even though he was still suffering ocd with food issues, anxiety and occasionally hallucinations. It was up and down on azithro for 9 months. So we switched overnight to the Penn VK and my son told me on day 3 of taking Penn VK look mom I can walk past the remote. Look I can eat off the left side of the plate. etc. etc. Eventually he told me "thank you" he said "I got my life back." I cried secretly. One down one to go (younger brother still up and down). Anyway for my 9 year old the key was finding the right antibiotic and the change was fast. The remission occurred in Jan 2012 and is holding steady today. You might also want to start supplementing magnesium and vit d both get depleted with abx use.

LLMD said clean up gut first this has been a big job and at times seems impossible since my son age 7 has zero motility! Been using Mag Citrate, Mag Oxide, Vit C, Taurine, Zinc, Enzymes, Aloe Vera Juice, Fiber, Diet rotation (very difficult) but managing to puree veggies into food hidden. Custom Probiotics, SAch B, culturelle, prebiotics biotagen and a few others rotated. Melatonin, milk thistle at night. Other supplements like multi-vitamin, vit d, quercetin, pycogenol, low dose naltrexone, transdermal glutiathione. Abx are Azithro, Bactrim, Flagyl, Ibuprofen, these are the meds I am sure slowing down the gut, but keeping the brain sane. He has made great gains but obviously still sick. He has a mild flare every 7 days does not last long usually some unusual OCD, Constipation severe, anxiety, fatigue, sleep issues. Managable and brief in nature but clearly sign of Bart cycling on day 7. Since starting this protocol he has had some fabulous days too and fatigue and mood issues are nowhere like it used to be. Itching is a huge problem for him and I am sure this is related to the constipation. I am noticing the protocol that helped tremendously has plateaued. Any ideas to get the gut dumping the bad stuff again? Diet and recipes would be helpful too. Thank you in advance. He is so much better when the gastro tract is moving things out. Sigh...constant battle.

My son has PANDAS and positive ANA titer. Went to Rhuemy and he suggested I give him ibuprofen if he seems like he has pain. He heard of pandas but said he does not treat recommended a neurologist and hemotolgist that might prescribe ivig. Said the ANA titer is unspecified test and unless the child has clinical symptoms of lupus or rheumatoid arthritis no need to treat with anything other than ibuprofen. That was my families experience in a nutshell. Good luck to you, you never know what appointment may lead to further help. The neuro he referred us to we ended up seeing did treat and is still treating. He also prescribed ivig but my son went into remission with abx alone so we have not had to pursue ivig yet. I leave options open because this disease is riddled with lots of ups and downs. Take care.

MY son tested negative on both for the Quadros test but our DAN said lets try leucovorin anyway because some kids see benefit. But when I filled the script at CVS the pharmacist was very concerned and said that leucovrin treats anemia and she wanted to make sure I knew if my son had anemia or not. I still have the abx but have not administered it yet. too chicken and my son was not positive for the test. I do have a circle of friends whose kids did test positive and have seen some good results. One of the side effects is headaches. You have to work up to the correct dosage and back off if headaches are experienced. Also you have to eliminate all dairy if you are going to treat folate deficiency.

Penn VK 2x's daily tics subsided. He still has his tonsils and he is still on daily Penn VK since Jan 2012.

Maganese is known to cause hyperactivity. I avoid it in my son's multi- kirkman sells one multi with and one without.

My oldest son DS9 had racing heart episodes 3 times in the past 2 years all episodes accompanied PANDAS exacberations. He had to go to emergency room where EKG did show fast irregular heartbeat which later became regular again and checked out fine and was also checked out fine by ped cardiologist at followup appointments. I think it was strep going after the heart or the symphatic response to antibodies from the PANDAS resulting in mild panic attack. He was on Zithro for 2 of the episodes and last time it happened he was on Penn VK. No drs' had any answers and like I said diagnostic tests after the episodes checked out fine. Sorry I wish I had more answers and I really wish Dr's had more answers I know it is scary but he is fine now. Sending healing wishes for your daughter.

Just wanted to share some common symptoms my son is experiencing so I am sure it is PANDAS related. My youngest son is in a flare and he is pushing his eyes (hard) and telling me they hurt. He also appears to be having vision problems like moments of being unable to focus. He is watching TV in the reflection of the windows. Scared of the dark again. Also getting sharp pain in legs like a bug bite. Neuropathy of some kind. I asked Neurologist and he was clueless. I increased his magnesium incase its RLS. I increased his Azithro, giving ibu and will start steroids today for the PANDAS flare and hoping it does the trick.

We are going on 1 1/2 years of abx therapy for my boys. I had to start rotating probiotics due to gut issues which has helped a lot. I used to use culturelle in the beginning but I now rotate the following and all have been helpful. Sach B used 2x's daily for a two week treatment a month. This is a therapeutic yeast that helps keep down c Diff and yeast overgrowth. I believe this is the same strain found in Floraster but I think I didn't buy floraster bcuz it had lactose I can't remember. But Sach B can be purchased online many good brands (ie. Klaire Labs, Kirkman) and it should be refrigerated. Daily Custom Probiotics 11 strain has been helpful for my kids, but in small doses. Too much is too hard on them makes them gassy and bloaty. Culturelle added in once and a while spread apart from custom probiotics once in a while if gut issues arise. Two strain acidophillus by Klaire rotated in occasionally. Prodegin by Klair Labs is a chewable probiotic supposed to address oral bacteria I let my kids chew one a day when I know they are getting a new tooth. Whatever you use just read the label and keep track of the billions. More is not always better. You have to figure out what dosage and strains your child does best on. Avoid strep strain (i.e. thermopillus) as a precaution. Also research supports that refrigerated probiotics are more potent.

Kim, you might want to check clostridia through great plains. My son did not have clostridia at the start of pandas/lyme, after a few months of abx he did and clostridia looks just like pandas in him. Flagyl calmed things down. Also giving a very small amount of benadryl before bed in addtion to his 1 mg melatonin helped with reducing the leg attacks, histamine itching and overall anxiety the next morning. Also the LLMD said benadryl reduces anxiety in most of her patients that was her suggestion. The separation anxiety sounds like PANDAS I think the T&A stirred up some bacteria. JMO. But the detox protocols along with ibuprofen will hopefully bring him some relief soon. He is healing and dealing with increased antibodies, you could try enhansa in food to bring down inflammation as well. Natural calm helps my son also and eating. Keeping the blood sugar levels up. I feed my son six small meals a day or else he turns into a bear.