HopeinHIM

Hi One more thing. Pierre Fontaine is a Homeopath not a Doctor. We take our eldest to him. Nice man but very, very expensive. We have had little success so far so we will only be able stay with him another month or so. I believe homeopathy can be a huge piece of the puzzle for sure but it needs to be reasonable in price bc you will be revisiting often. For us anyway!! We were able to Skype with Pierre and that does help!

Thank You!!!!!!! Great advice

Deep breath. Sounds like you are in the eye of the storm. I too he an 11yr old with vey similar symptoms. It's been 2 years. I will message you my cell bc too much to discuss. If you like you can call me. We are on the East Coast. It's a journey for sure and every child is so different so no one thing works for all. Have you done the Igenx?? Does she have any physical symptom's? Sore feet? belly aches? head aches? My son had the Igenx and it was inconclusive but the Dr began treating for Bartonella and the rages and ODD stopped. He too says he is afraid of everything all day. Uhg these poor kids!! If their nervous symptoms are on high alert then that's what you can expect. Check her viral load. We give Lysine and it helps a lot as well. Our Dr also placed him on ADP Oregano and it helped with yeast amazingly. Better than the Diflucan for us. One of the anti biotics that cross the blood brain barrier might be very helpful. Minocycline or Rifampin. Every few weeks on the meds you can expect things to get worse due to die off reaction. Make sure she is getting some detox help. Even the best doctors don't' usually address all of the components involved with this illness. You have to do your own research and take what is helpful from each. It's sadly trial and error along the way so keep a daily journal. Hang in there and call me if you like.

Dd 6 is struggling. She is my little niece. I have received so much from this forum with my DS so I know the depth of knowledge that can be available. She began emotional liability in the summer and quickly moved into anxiety attacks. She has always been sensitive and very clingy and has tactile issues as well. She is rarely sick and never needed antibiotics. She is bright and in kindergarten and doing well when not having uncontrollable attacks at home. Symptoms: mostly all psychiatric manifestations. Paranoia/some hallucinations during anxiety food issues separation anxiety lots of cavities (over 20and counting) occasional weak legs screams she wants to die body morph issues (thinks she is fat and ugly)She weights 45lbs and very tiny little girl! Dr T diagnosed with PANS bc of her symptoms and family history with my DS . Cox socci was very high as well. With Diet changes (no gluten) and 2 months on Valtrex her attacks calmed slightly (less frequent and not as intense. But they are returning. She started to see(llmd)Dr G in Pa and he ran Igenx. IgM IgG 39 IND 31 IND 41 + 41 IND LLMD says he will keep eye on her but doesn't think its lyme's. Poor baby. She says she wants to Die bc her brain wont leave her alone!!!Dr recommends hormone Pregnenolone supplement bc hers was very low <5 IgG IgA and IGM standard labs were all on low side but Still NORMAL! Her mom is polarized!!

Dd 6 is struggling. She is my little niece. I have received so much from this forum with my DS so I know the depth of knowledge that can be available. She began emotional liability in the summer and quickly moved into anxiety attacks. She has always been sensitive and very clingy and has tactile issues as well. She is rarely sick and never needed antibiotics. She is bright and in kindergarten and doing well when not having uncontrollable attacks at home. Symptoms: mostly all psychiatric manifestations. Paranoia/some hallucinations during anxiety food issues separation anxiety lots of cavities (over 20and counting) occasional weak legs screams she wants to die body morph issues (thinks she is fat and ugly)She weights 45lbs and very tiny little girl! Dr T diagnosed with PANS bc of her symptoms and family history with my DS . Cox socci was very high as well. With Diet changes (no gluten) and 2 months on Valtrex her attacks calmed slightly (less frequent and not as intense. But they are returning. She started to see(llmd)Dr G in Pa and he ran Igenx. IgM IgG 39 IND 31 IND 41 + 41 IND LLMD says he will keep eye on her but doesn't think its lyme's. Poor baby. She says she wants to Die bc her brain wont leave her alone!!!Dr recommends hormone Pregnenolone supplement bc hers was very low <5 IgG IgA and IGM standard labs were all on low side but Still NORMAL! Her mom is polarized!!

Hi, You seem to be doing the best you can. Keep educating yourself and your husband. Don't let him fall behind or it can be a problem. caregivers need to stay connected. With that said, I have a DS11 who exhibits similar symptoms. After many months, we found Bartinella and Babesia. He is finally calming down with Rifampin. We too are organic natural parents and abhor anti B's but many have found herbals and anti B combos work the best. My advice, keep her in school at all costs. This can be a long journey and once they start a life with NO school they many times DO NOT want to go back. We took our son out in 4th grade at the end of the year and he has yet to return 1 1/2 yrs later You are correct the wrong anti B can cause issues for lymes. She must have the correct type (minocycline for example is good for Bart bc of the ability to cross Blood Brain Barrier)We use Stephan Buhner herbs as well. We go one at a time very very slowly. It is painful to watch I know. Just try and stay positive for her and let her know that she WILL get better. Much blessings!!

I sent you a PM. Too much to post

My Ds does the same thing. Especially when he is PANS flare. Neurologist believes it might be Seizure related however EEG did not detect anything. The Meds they might suggest will be anti seizure possibly. Topamax was mentioned with us. I agree that it is important to rule out and investigate further for sure! This only happens when he is in PANS mode. Because of this, we have decided to put on side burner for now. BUT this is only after we had him tested and evaluated thoroughly by neurologist. We are treating his Bartinella and hope it goes away when infection does.

DS11 has a defected 12 yr molar and we are having it pulled next week. They are going to sedate him. Should we forfeit the steroid pills they give post op for swelling? He has been on anti b for 1 yr and worried about the whole thing. He has been thru so much and this is making him more anxious. Just wondering if we should just opt for Novocain bc I read somewhere that Pandas/Pans kids can get funny with anesthesia. Thanks!

oops, your boy I meant!

This was our son to a tee. Rages only stopped after we we began treating for Bartinella. He is 1 yr into treatment and also 11yrs old. No school for 1 yr either. We tried many psych meds as well and none worked but many people have luck on some form or another. Its just a matter of finding what works and going very slow and low!!! Steroids made him worse too. He is on Rifampin and lots of detoxers along with low low Buspar and 40 drops a day of Bluejay CBC oil. All lab work came back inconclusive for Lyme's but the LLMD treated anyway thank GOD!! I am so sorry and please feel free to email me anytime. Hang in there. Your little girl is inside there. Please believe that!

Hi, Thanks for your prompt response. Yes I agree. When we started this LLMD last month our DS was so sick from g6pD reaction to Bactrim and other supplements. He says he works like peeling an onion and will go slow one infection at a time. I am well read on rifampin and spoke about in not being used as a solo and he said he will add later. Its been 5 weeks and we are very low. I do see a good response but not by far 100%. The moods and bi polar like behavior is still here on and off but seeing more of his old self peek thru. This LLMD had been doing this for 30 yrs and has a protocol I guess. I will insist next visit though so thanks. We are taking Kudzu and ramping up with Julie M the Buhner herbs. Also LLMD started us on Pinella for brain detox and has been just short of AMAZING and just started Spargo for Sulpha detox (metragnx product) we are getting some herx help from these. It just goes from bart herx into PANS reactions (flares) over and over. We are now starting to see babs stuff we never saw before. We will address this concern next week/ One more thing, we are also attempting redroot intro but at even 1 drop he cant handle it. Thnx.

Hi everyone, Ds 11 PANS/Bart/Babs. Has had this for 7 years but treatment only 1 year. We are on Rifampin .75 mg every other day. (solo) Doc doesn't want to add another anti b yet . I know that's way low Any more than that, however, and it becomes unmanageable (herx and PANS). We are already homebound. Hey but!!!! We are finally seeing clear days Yipeee. He has time throughout the day where he is actually happy and thinking clearer. Another yip! No more wetting bed and feeling finally in his feet. But!!!....... Past week or so he has started becoming paranoid. Makes comments that he is scared of aliens and that Daddy is cheating on Mommy and people might peek in the windows at night. This scares the heck out of us. Still has moments thru out day of crying and clinging and extreme emotions but the paranoia comments come when he seems calm. Anybody have this.??,We have seen this before when treatment first started. (1 yr ago) Starting Buspar today (super low dose 1.5 mg). Psych meds as in many of the kids, don't work typically for him. However, the emotional instability comes on like a tornado AND PRACTICALLY cripples him with fear. I know this could be around a while so looking for some relief for him. He describes the anxious feelings as if they come on him like a giant wave of nerves. Doing Hemp oil,& passion flower .Yes they help. But not nearly enuff. The paranoia piece is really most often seen when he is more calm. Its intermingled in his normal talk which makes me more scared. Thank you for any comments you can give! PS I am embaressed to say I have considered asking the doc about giving him low dose Xanax. All the other serotonin and dopamine drugs mess him up more. Thanks again!!

Yes. In our case, our child was doing great first few months and then became weak and began to decline. We found that he developed G6PD (unable to properly process sulpher drugs). Blood test can help confirm. Many people have some sort of sulpha issues but never know it because it doesn't become an issue for them. Our DS had a slight deficiency but antibiotics (our case Bactrim) and stress to body on certain sups can cause toxic oxidation in some. Now we have to go very slow on everything including anti b and had to remove many supplements' that irritate this condition. It can be serious so look into it. On the hand, anti B's themselves can weaken the immune system. I know that sounds like an oxymoron but this is the tight rope we all walk with our ill children. We increase immune boosters while treating in hopes to balance out the possible negatives. God Bless!

Pr40 if you could respond I would appreciate it. Our son was recently diagnosed with G6pd (sulpha issue) He did great on Bactrim and artimisine for three months and then began a decline. We didn't know about the G6pd so we were adviced to give around the clock advil for inflammation(major prob for this condition). He got worse and soon became too weak and he never left the couch. We now know he has it. His blood level results came back at 46?? Don't know what that meant other than he was positive for it. Problem is that now he can barley handle anything. Super sensitive to all drugs most likely due to the Sulpher toxity. We have him on Rifampin 7.5ML every other day. That's 1/2 of 150 mg every other day. He herxes or falls apart for weeks if we go fast. I know Rifampin is not good pulsed and given singular treatment but he just falls apart and cant function no matter what detox we do. The 3 doc's we have take this lightly. They don't seem too concerned and I have to keep reminding them along the way he has it bc they will recommend things that are counter indicative to the condition. This has been a huge set back for us. If we give even a 1/4 amount of psych meds he reacts so we cant really add anything to treat his mental symptoms. Using CBC oil 40 drops a day and passion flower. Do you do low and slow on anti B as well?

Ds is now having burning feet in the shower and then begins to get very emotional for some time after. Can the heat from shower cause a Herx? His feet turn fire red and now he claims his skin hurts all over for about 30 minutes after he gets out. I have tried cooler water but it's still warm enough to cause reaction. He hates the shower now and rarely enters. Any ideas? Perhaps an antihistamine before? Is this a good sign that things are dying?? I mentioned this to his doctors and they just sort of shrugged. He is being treated for Bart and on Ramifcan 150mg a day. LLMD does not want him on another even though I have read two is necessary. Trying to stay on treatment and trust the doc. Thanks for any thoughts

Wow! You are a gem. Thanks for sharing. The timing is perfect for us. I wish you all continued healing

Hi, Our DS 11 with PANS/Bart and now new LLMD says Babasia. Doc says he will deal with the yeast in the future n wants to take it slowly. I want to deal with the yeast now with an herbal remedy if any out there. Our son is sensitive and herxes easily so I know I need to remain low and slow but still want to start something., What works for you. and what brands do you like as well ?? Our new LLMD is not integrative so he didn't seem to alarmed about the yeast he found in or DS mouth. Thanks for any suggestions.

My son has problems when flaring with words as well. Struggles to get words and sentences. It is very scary and odd to watch. I know of another PANS child that suffers from the same symptom. Our DS is 11 and very bright communicator most times.

What a blessing this was to me. Thank you for sharing !!!

Oh!! are we right there with you. Our Ds 11 has PANS/Bartinella. The meds make him sick so he herxes from the kill off PLUS he also has PANS like reactions along the way. So behavior and mental issues all the time pretty much. SSRI's and Psyche meds haven't worked well and forget therapy. Our PANS doctor tells us that his patients don't respond well to therapy or psych meds. He tells us to keep pushing along and be patient and when he stabilizes much of the behavior leavers as well. Hey it been 1 year. But with flares we can expect some of it will return!!!! SO HOW DO YOU RAISE THESE CHILDREN?? We also are letting sooooo much bad behavior go because he is so fragile. One correction can turn into an hour of tears and sadness. Yes, and hour of vgames and no chores with little school responsibility. OR any responsibility for that matter. These PANDAS kids just cant seem to handle much. God bless them all. Everything overwhelms my son so we just have to turn away and let it pass. WE just scheduled 3 weeks of intensive at the Rothman Center in Florida. Its several weeks away and we are hoping the Bart and PANS are somewhat under control so we can begin to show him healthy VS unhealthy behavior. WE need professional help and sadly there is just so much confusion and speculation. Just wish the Docs would come along side a bit more and confidently tell you what to expect with encouragement and support. We are all in this together but apart. I am sad to read your post but relieved to know I am NOT alone and neither is my boy!!

The book goes on to say the negative charge is a relative potential depending on location. However, it is still the most negative charge available in our environment. It cans cause a herx so once again 'slow and steady' wins the race. Start with bands for at least three months prior to using any other grounding products. http://www.earthing.com/product_p/sobbk.htm The individual that gave me our earthing starter package wrote several pages for the book, has suffered extensively from Lyme et al (now considered in remission), is a well respected Lyme blogger and in the process of writing a Lyme book. I was essentially a non believer and now our entire family sleeps grounded nightly. HISTAMINES: Test histamine level and consider mast cell stabilizer with your Dr. We now use Cromolyn. There is also Ketotifin or other over counter supplements available for mast cell stabilization. Thank you, I will down load this and read. I will also look into purchasing some Ketotifin. My questions must sound like a ramble most of time (that's my mind now a days sadly) I think my questions are straight forward but not many responses. We are moving and I did actually just buy the sheets but did not put them on bed bc he has been bedwetting. But I have them. This new house is a bungalow with only 60 amp going into home. I don't know much about this so will really research it. Thank you so much!!!

I just got this response from Dec and not sure why! Ok if it's herxing than why are the docs (llmd) simply assuring us of this and requesting us to push thru. I call the offices to share the reactions and they immediately say stop med!! The burning feet? I know that's Bart right? But the docs say you cant be sure so stop that one too. We just had him on 2 weeks of Minocycline and he was clear thinking the first time in weeks (months actually) and he broke out in hives!! Dr T says again "stop" meds and we will find new meds. How can we gain any ground like this? I don't know what is herx or serious reaction from drugs and I guess neither do Docs. As far as Detox I have him on Charcoal at night and lots of lemon water. Plus calendula drops and Kudzu for lymph drainage. Also Beyond Balance neuro detoxer. Our LLDO is very experienced supposedly and we just don't get why they don't tell us calmly "this is to be expected" Instead they say stop and we will try something new!!!! I specifically ask "is this herx?" They respond by saying it may or may not be but let's not take a chance. I don't want to keep my child on something that can potentially cause a threat to his health. But we also want to try and give the treatments a chance. Thanks for answering me and have a nice New Year!

DS 10 has PANS/Bart we have tried a few anti B cocktails and azith/Bactrim/amox worked great at clearing his brain. However he grew allergic (anemic) to Sulpha drugs and had to stop the Bactrim cocktail. WE have tried several combo's Rimifcan, Omnicef, and just now minocycline. PLUS we always do Half dose for awhile bc sensitive and yet he still has these reactions. The first two made his feet numb and the Minocycline, although was working great for two whole weeks, began to cause hive attack. We are also using Stephan Buhner herbs very little, very slow & very low. Question: Any children do well with Doxy? He is over 8 yrs old. I think that's our last choice for the Bartonella treatment? He tolerates azith well. Just want to know what has been working with your kids with this rotten co-infection? Thank you all!

Oh momslove, I am so sorry. I too struggle with a similar situation. Such strain on the marriage. My husband understands only to a certain extent but then holds Ds up to standards he can't possibly fulfill. I am happy at times that our child showers and brushes teeth or joins us for dinner. I see that he is trying and suffering to just survive sometimes. This causes serious mental struggles. My H just wants everything back to normal and wants to push things to get there. Its counter productive for sure. I do the best I can to educate and keep him apprised our Ds illness and that is all I can do. It's all so complicated that even many doctors don't get it!!!! This will get better so we must all just hang in there and be strong for our beautiful afflicted children. Who could possibly understand this world we are in. Persevere!