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HopeinHIM

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Everything posted by HopeinHIM

  1. Oh trinitybella, We lived that world several months ago. It's "purchase OCD" . In other words, it is not the renewed energy from the antibiotics so much as it is a different form of anxiety/OCD. The anti B "may" be making her anxious and this is how it manifests in her at this time OR she may be flaring as one mom mentioned. When our Ds was OCDing over clothes and sneakers, it was almost hysterical each day so there was no logical talking with him or negotiating. One more important thing! Have you checked co infections???? Once we started treatments for Bartinella with a cocktail of three anti B's, it stopped!! We spent over $5000 this summer on skateboards surf boards sneakers and more that he HAD to have or he would become almost psychotic. Therapy did not help us when he was at such high anxiety. He would calm for a day and then start a new purchase obsession. Each morning I would wake up and be fearful of what the day would bring. We started Bactrim/Zith and Amox. That is what our doctor recommended but seek professional help and know that many of us out here feel your pain. Now that he is a bit calmer, we can begin therapy. By the way....SSRI's made it way worse and caused many more problems for us. Explore your options carefully. Much prayers are going your way. Hang in there. Big cyber hug.
  2. Hi We all feel your pain. As mentioned above, educate yourself now. He may have a predisposition to OCD and anxiety so research that as well. You need tools in place to handle this illness. He needs tools as well. Nobody can predict that this will not happen again. Sorry! Have his immune system checked and do in depth testing for Lyme's and co-infections. No tick bites here so each time a PANS mom mentioned Lyme's I dismissed it. Sorry I did.!!! Our Ds had a similar bout as your child when he was 7 and then nothing until he was 9. He has PANS from various viruses and infections. No blood work showed anything other than low igG and low IgM but we have been treating for Co Infections for Lyme's . Most people on the forum have a team of doctors. A PANS/Pandas doctor and a naturopath along with therapist and neurologist. It all depends on the background of the PANS doctor you choose. Ours is a neurologist and our naturopath is an immunologist. We now have a supplement protocol in place to build his immune system along with prophylactic anti viral and low anti biotics. This can be a long journey. I know you are tired and its been two weeks but change your mind set. If your child had diabetes you would have to deal with it as a marathon not a race. That is what this is. A marathon. My husband wants to address it fast and then simply fix it!! Doesn't work that way. Your child needs" compassion" and extra love bc this is so painful for these children. The only way you can do that is by educating yourself and your entire family on this illness. This way you have a plan in place and you wont be side swiped like so many of us!! My family spends a lot of time in prayer!! We also don't take any good days for grant it. WE thank God now for the Normal!!! when it comes!! PS Our PANS doctor is $500 first visit and then phone consult $300 for 50 minute follow ups (every other month) Our Lyme's Naturopath was $800 first visit and $225 for follow up or phone consults. All out of pocket except some Lab work and meds that are covered. My husband work 2 jobs 7 days a week. I am now our DS full time stay at home care taker. This is a season and it will pass!
  3. Hi I am changing my question because I think I was rambling on and not clear. That's the new me. Too many views and no replies Each time we start a new anti biotic for DS Bartinella he has feet reactions that are scary. His feet go numb or burn red . Not everyday but on and off! We are only at half dosage as a result. I know Bart effects the feet but do we push thru? Do any of your children get these feet reactions on meds and what do you do? Afraid of nerve damage. Treating Bart for 6 months and this just started happening a few month ago. We have changed up anti b 4 times. Maybe it's a good sign?? Or is this a sign its not working? Thank you for your help.
  4. Thank you for sharing. Thank you all for sharing. It's been one year this Dec. 6 months searching and 6 months treatment. When I hear these stories my heart breaks for these children. It also makes me stronger for my child so God bless you all for taking time to tell your story. It helps my family members especially!!
  5. Hello, We are now on zith and Minocycline in an attempt to stop one long low grade fever flare. Reacting to so many meds now with odd side effects so we must be very careful. His feet burned with Valtrex and his feet went numb on ramifican. FEET?? Diagnosed with Bart/PANS and treated for 5 months. We stopped bc med reactions. Within a week, attempted to regroup and it all returned. (lymes/PANS symptoms) Tell me something, are we alone? I mean does anybody else see this? I read that so many kids go to school. NO way here. How do ypu get your children up and out the door to school each day???? DS can up and get dressed but it's very slow and fragile. Our DS rarely wants to leave the house. If he does, it's for a short time and then he refuses for the next few days following bc he feels overwhelmed with his outing. Also.....please tell me what do these children do all day??? Mine can't go out or read or play much.... so he only watches TV and waits for video time to kick in. NO friends bc rarely goes out. He was only aloud on Vgames during weekends pre PANS , but it seems to be the only thing to calm him down and he is now up to 5 hours a day. It's become an addiction. It's all he thinks about!!!! What do we do to passs the time with him?? Love to hear if I am alone or others see similar pattern as well? Thank you all for your kindness and knowledge.
  6. At this time we have dr T in NJ for PANS and Dr B for Lymes/pans and Dr Tom M. integrative. It may be over kill because I just added Julie McIntyre for herbalist. Dr.Tom will do what ever you ask but seems very busy. His assistant is a doll to work with. Even with these major heavy hitters though, we need to be our son's advocate and because things get missed. At this point we are waiting for more blood results bc he seems to be partial G6pd and much of his treatment in the past has been getting him sick. We shall see.
  7. Yes, who are you using? The anti B's are not really working at this point so seeking other avenues. Herbs and such.
  8. Is your child attending school? So many of these suffering little angels are actually able to attend. NOT MINE! I just don't know how they do it.
  9. Thank you! I had mold specialist come and do air quality test. All was OK! Blood test shows all immunities are dropping IVg IvM bilirubin up. He tested for possibly having g6pd and he has been on Bactrim for months. This is on the no use g6pd list. I am not sure but he looks pale and feels weak. I feel like the anti b made his immunities drop. They can do that! Now he is on Valtrex for his high cox sooci . He has been on 7 days and all seemed very well, but as usual he starts to feel warm and begins to act very unstable (crying/laughing) then he throws up. Tonight his feet are burning him. I feel like I am killing him. Valtrex is strong med. At first I felt like it was the panacea and as with all meds we have him on he begins to decline on them after a week or two and never bounces back until we remove. If we reintroduce he gets sick again. I understand the dangers of changing up meds so much but when he looks so bad and tells me he feels like he is dying, what do you do?. I will try to find a psychiatric drug that can calm his ocd and nerves down and hopefully control him a bit while we treat the viruses and such. I know that is so very difficult with these kids. SSri's have not been our friend in the past. We are doing the Mthyl test next. I was giving high pro biotic but Dr T said that too can cause issues in some if they contain D-Lactaid it can cause acidosis. I just use lactaid bacillus brand now. Day by day!! PS I just checked his last SpectraCell test. ! YES Deficiency in copper and B12 (not zinc) But very interesting. Dr Tom didn't mention supplementing however. A few days a week I give him a methyl B12 1000mg. or just a B complex (methyl) I assume that would help.
  10. Thank you! I had mold specialist come and do air quality test. All was OK! Blood test shows all immunities are dropping IVg IvM bilirubin up. He tested for possibly having g6pd and he has been on Bactrim for months. This is on the no use g6pd list. I am not sure but he looks pale and feels weak. I feel like the anti b made his immunities drop. They can do that! Now he is on Valtrex for his high cox sooci . He has been on 7 days and all seemed very well, but as usual he starts to feel warm and begins to act very unstable (crying/laughing) then he throws up. Tonight his feet are burning him. I feel like I am killing him. Valtrex is strong med. At first I felt like it was the panacea and as with all meds we have him on he begins to decline on them after a week or two and never bounces back until we remove. If we reintroduce he gets sick again. I understand the dangers of changing up meds so much but when he looks so bad and tells me he feels like he is dying, what do you do?. I will try to find a psychiatric drug that can calm his ocd and nerves down and hopefully control him a bit while we treat the viruses and such. I know that is so very difficult with these kids. SSri's have not been our friend in the past. We are doing the Mthyl test next. I was giving high pro biotic but Dr T said that too can cause issues in some if they contain D-Lactaid it can cause acidosis. I just use lactaid bacillus brand now. Day by day!!
  11. Hi yes four months treating Bart with Dr B. Now doing Babs with herbs. But!!! He can't seem to handle the herx reactions on the meds. He just falls apart for weeks. Thanks for answering!!
  12. Oh so sorry. I feel your exact frustration. I just pray all the time to get thru the day for our Ds10 as well. A few things to check into . You say she is tired and weak so check to see if she is G6PD deficient. . If she is on frequent Advil and sulfa drugs, they can be making her sick and weakening her immune system. Also, some of the high pro biotics we were using caused D-lactaid acidosis in our boy as well. Research that a bit. Now only giving him Lactaid free probiotics. DS has low Igg and IgM. Dr T has mentioned IvIg but we are trying other things first. After 4 months on three different anti B he started to grow so weak. It's a tuff place to be because many traditional Docs don't support treatment of Pans . Oh maybe a 10 day anti b try, but overall, l they say they don't stand behind my husband and I with long term anti B treatment. They just offer mind altering meds. Our child has been in crises state (no school) no going out ) for several months. ALSO we r treating for lymes. (his ped doesn't think we should be long term on those meds either) Like you said so many doctors and so much confusion. This illness is difficult!! Every child is different so don't be afraid to follow your instincts and seek third or even forth opinions. Our son on three different anti B came back with active Strep!!!!! HOW? I guess these children just have weak systems. For now we are removing all anti B and doing anti Viral bc his viral load is high. Focusing more on boosting his immune system and regaining strength. The Prozac made him suicidal as we titrated. PLEASE be careful increasing the SSRI. I am not sure how to calm their minds when the PANS meds are not exactly curing them at the moment. I am looking for something as we speak but Prozac and Luvox were not the answer for us. Try and stay positive and you are NOT alone!!
  13. Has anybody heard of this Nurse practitioner?? Her son has Pandas and she has a protocol for treatment. We are in NJ so this would be a far and expensive trip. Our son is getting weaker and we need new direction. We will be trying the herb route soon but perhaps she has something new up her sleeve???? Dr T will be reading all our new bloodwork tomorrow so we are hoping and praying there is something to zero in on. Checked mold, checked methyl. No mold, and no methyl issues except folate. Also low in carbon as well. Stopped all anti B's and Malarone to give his body a break. It's al;most like he has Mono or EBV. He has little energy much of the day and gets dizzy often with headaches. But this has been going on for 1 month and 1/2. His moods are up and down and when he begins to get very emotional he feels almost feverish each time. I was treating with advil and alka selzer each day but how long can we give the child this?? Wish us luck w dr. T.
  14. I am speaking with Julie M Dec 8th for myself and Older son also to see if it will be too overwhelming for me to do with 10DS.Older son tested Poss for Babs but no real symptoms except tired often. I guess I just don't know anymore if younger boy has Bart or Babs bc th igenx and all other lab work came back negative and Dr T thinks Lymes and Pans overlap with symptom's!!!. Dr T says he wouldn't even treat BABs with lab proof. I think I will have Julie M just treat overall immune system which is what I am leaning toward these days for all of us.. I bought the books you recommended and wow way in depth. I hope she isn't too busy to be accessible somewhat. DS responds psychiatrically so often it's scary. Little things send him off. Thanks for all your great answers.
  15. I feel like the Needy Forum MOM !! I write on here often lately because it tends to give me some relief! Thanks you !!! Your advise is always helpful!! Our Ds tends to be sad and depressed often with frequent crying bouts . He was never moody or sad in his life until now. Is this PANS?? Or is it Bart? Can this be Pans Flares in him? or does Lymes have to be in the picture for such strong neuro reactions??? He was treated for Bart for past 6 months and at first he was great no more rages and more improvement's but then after several month. he began to decline and now sad and cries often . Like before treatment. SSRI's only cause him psychoses. WE also started treating Babasia but the Malarone makes him more depressed so that we had to stop after 10 days. We have two top doctors but they disagree as to whether he has Lymes at all bc Igenx came back negative. One wants him full force on Babs treatment and the other says no. Hmmmm confusing I know! We decided to treat on clinical anyway but his sadness and crying has flared again and it's awful to watch. I am waiting on more lab work and he currently is only on zith 1 x aday. Other anti b's were causing side effects so we removed all for now. He began throwing up with Augmentin and could not walk well on the Omnicef. AND Bactrim made him so dizzy !! He did well on these meds for several months but eventually all began to negatively effect him. I am testing my home for mold as we write. I give high doses of quality probiotics. I even stopped supplement's to see if his body just needed a break. Appt with Dr T Friday to read lab work and hoping some virus is the culprit. Does anybody have PANS child who has this emotional labiality?? He doesn't get anxious much and his OCD is not very typical OCD. He is also on low liquid lithium and has been for 6 months. (very low)1/4 ts a day. I really hope the new lab work shows some answers. NO school and rarely wants to leave the house. Much blessings to all!!
  16. Who is your doctor?? Our DS 10 sounds very similiar. Anti B worked in the beginning and then he just back slid. NO school as well.Since last March actually. He was a straight A student. I had a great tudor set up this year for him as part of his homeschooling protocol, but every time she comes he starts to stress and can't read or think. Yet he does do hours of video games. Most days he is home and if I get him dressed or showered its considered a great day now.UUUHHHGG! OK so have you looked at perhaps that she may have alot of neuro-toxin build up due to the meds? how is the Mold around her? Check out her environment bc mold can cause much problems. My boy also reacts oddly to high glutithion. I know it is supposed to be a huge immunity booster but I think that some of these children don't have great detoxing abilities so I cut back alot on that suppliment for now. How much ProBiotic is she getting??? Yeast can be a n issue as well. I am not a doctor of course, but if u are not getting the results you need, I would keep searching even if it means new doctor.I am getting a third opinion as we speak.!!!! Hang in there I know this is horrible!
  17. Oh my, there is so much that I (we) have learned this past year. Our DS 10 was diagnosed with PANS and then Lymes. Treatment has been up and down and mostly down these past few months. I have learned that you can NOT actually run out of tears while watching you child struggling to maintain sanity each day. NO...Each day there is a whole new fresh batch of tears produced. I have learned that the power of a mother's love will take you to the end of the universe if need be until your child has some peace and normality. I have learned that that this illness can absorb every part of your being if you are not careful. I have learned that I MUST force myself to focus upon other family members despite me not wanting to do anything but research PANS and minister to my sick and needy child. I have learned that most people don't understand and that when mental illness is mixed into the equation, people will run away faster than a roadrunner. It is as if your child has leopercy. I now have more compassion for others who are ill and remember to send frequent notes of encouragment . I have learned that sometimes, with much prayer , that I am a mighty worrier for my boy but at the same time in the same day I can also fall apart and lose all hope. This is a journey that nobody would dream of or wish on their worst enemy. None of us asked for it and yet most of us embrace and face the challenge. I have most importantly learned that all that I do and all that the doctors do.... ultimatley, our children's future rests in the arms of God.
  18. My DS diagnosed with Babasia and Bartinella and he had same breathing issue. Only in the evening!! Dr B calls it "air hunger". He also has bladder spasms and sometimes goes several times in a hour. Pans/Lymes looks to be the picture. He also sufferes from sore feet and headaches! Good Luck!! and God Bless!!
  19. Ds never feels good anymore. Treatment for Bart since July and Babs treatment beginning of Oct. He is on Zith 250mg Malarone and some suppliments. We removed the augmenton and Bactrim because his stomach was always upset and he was just too weak to leave the house half the days. Doc said cut out a few of the meds and see. He had bloodwork and even while on the three anti B he showed active strep. Do these children feel tired and weak most of time. He flares with crazy emotions with each herx(i guess that what we see) and he stays fragile physically and mentally for several days. But now (past several weeks) there is no bouncing back. No school, no leaving the house most days.
  20. Our DS 10 pschologist was comfortable treating our child when he was thought to have sudden onset mood disorder but once diagnoased with Lymes/Pans he dismissed us. He says he doesnt really believe in Pandas or long term lymes. UUUHHGGG!!!! Our DS has on again off again issues and we need some support on how to deal with them. Does anybody have a person they can recommend?? We are in Central NJ. Our DS spends days in the house and on and off OCD plus just mentally dealing with this sudden illness that has attacked his mind and body overall!!!! Nightmares from hospital stay haunt him as well. Poor kid just needs some professional, experienced help. My husband and I could use some support as well. This is overwhelming. One day a healthy active child and then the next day he is homebound and sick all the time. Thank you in advance for any recomendations. We will travel if we have to.
  21. Hi, Doc mentioned that Low dose Naltrexon could work as well IVIG and he has good experience with Pandas/Pans/Lymes children in his practice. Low low doses only. In pill form. 1.5 to 3 mg. I know it has some side effects and the children can have some very lucid lively dreams for first few weeks. I am hoping to hear if anyone has tried this with their child. My 10 yr old DS has Babs/Bart/Pans. He is super sensitive to all herbs and meds and his herxes or side effects last for a few weeks. Most all his reactions are neuro as well . This effects opiate receptors in the brain initially but then somehow boosts' the immune system after. Please share if you can! Thank you.
  22. Our Ds10 diagnosed with PANs/Bart and most recently Babs. We were doing very well for several months . Dr B put him on Amox/Azith/Bactrim. The cocktail seem to stop our son's very sudden onset of Bipolar like symptoms. Once on the meds he herxed every 2 /3 weeks but mostly physical pain no neuro really. We were OK bc he was getting better. Thought he only had PANS... Never knew he had Bart so was surprised that once med started many typical lymes symptoms appeared. WE were just happy that he calmed down mentally. In Oct (4 month into treatment) we started Babs meds Artimisinine and he began having all the old mental symptoms return (emotional irregulation, depression, agoraphobia, eating issues anger w baby talk) He was also fevering. Blood work showed active strep so Dr removed Aug tx and replaced with Omnicef. It was the Omnicef that caused him to stop walking we soon found out. (odd side effect) Once removed five day ago he began walking and doing better back to base line. However!!!!We never replaced Omnicef anti B and he was on half his Bactrim as per doctors orders. Doc wanted to cut back on anti B and add Babs treatment Mepron. Our Pharmacy has it on order. BUT tonight he had a complete regression. He raged and said his head was all crazy inside. Do we start all over???? afraid to start Babs treatment because Bart isn't under control. Dr B wants us to go to dr Jones bc he is more knowledgeable w treating Lymes. That's months of waiting, Can Babasia cause a lot of mental instability like Bart????? Oh man! sorry just everything unclear.
  23. Started with Malarone for just 2 days then removed bc so sick to stomach then moved to low dose of Artimisinine 3 more days. BUT he had active strep at the time we began this bc blood work came back telling us so. I think we should have waited to change up his anti b's a bit get rid of strep and then when healthy again maybe start Babs treatment. Dr B just ordered the yellow liquid med (?) for Babs treatment but I am going to wait until he calms down here. Dr B also withdrew Omnicef thinking that might be making his legs so weak. He can not seem to handle any BABS treatment. He get's mentally unstable immediately . 2 days not walking but this afternoon he is again. This disease very well may put me in a institution. If he looses ability to walk again I will take him to the hospital and have him looked at.
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