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Everything posted by HopeinHIM

  1. Help- son is now 19 and still suffers from some neuro psych symptoms. Need a quality psychiatrist who knows about brain inflammation & meds
  2. Ds 15 diagnosed at 10. Three long years homebound and once PANS under control we had post viral CFS. He is healing and physically stronger than ever he is even on sports . But still emotional and focus is way off ADHD and he is beyond messy. I don’t mean to sound unappreciative. We are so thankful he is healing but he leaves everything everywhere like tornado hit the house. Blows his nose on tissue throws on floor. Clothes all over home. If he makes cereal for example milk is all over n cereal is on the floor. We remind n remind n yell and reason and yet it’s now year two of this mess and zero executive skills . As a toddler he at least made efforts and was much neater. Now .....He ignores and if we press him he says “stop yelling.” Or “It’s never enough with everyone” . Huh? He even leaves back back in the yard with shoes socks wherever. No concern. No effort. Embarrassed to say but he pees all over toilet n floor as well. Missed toilets n never flushed. What the heck! We go over toilet rules n everything daily and just says “ sorry mom” . Teeth brushing spits n never ever rinses I takes him to sink n go over n over and he says oh. I forgot. N laughs. Help!!! . Used Dental floss left out everyday almost like he refuses to use garbage. He just doesn’t seem to get the way life functions. I don’t get it.
  3. This is a while out so not sure if you will read Yes to all. My sons stomach ached all the time and he complained of leg pain and at times couldn't walk out of no where. He is also double jointed
  4. Hello. Four long painful years. Our now 14-year-old DS is entering life but having a difficult time with the school IEP CSteam. They doubt the cognitive struggles that still remain. Uhg. I would like to have a Nuro psych eval done. However we were looking for someone who is familiar with pans and the cognitive fatigue and brain fog n various other restrictions that occur and affect his education. Any names would be helpful. !! Ps have medical neccisity letters from his immunologist but they want more. Very difficult cold people. So sad.
  5. Its been four years. Our DS had PANS/Bart and not sure what else. At 10 he fell apart and after 3 years of blended treatments and many diff specialists (plus No school) his immune system is stronger and most all past Extreme PANS symptoms are gone BUT we have a belligerent, arrogant unlikeable teen who is consumed with only himself 100% of the time. He is an clean eater and in very good physical shape now We are beyond blessed bc healthy lifestyle helped turn him around for sure. (no dairy, GF no soy) We r unable instill responsibilities bc his horrific focus/ memory is way of the charts and executive skills are like a 3rd grader. His home routine is that of a toddler. He use to be neat as a young boy. Gentle reminders like sticky notes, alarms... any attempt at getting him to just hang a wet towel is ignored. He is not JUST messy he tears the house apart each day by just getting ready each morning. We are so happy he is out of bed and getting himself ready now that we are ashamed of ourselves that we are even concerned about anything else. He looses everything IE....phones, shoes, clothes and money. I work part time and the rest of my time is helping him function. We live on the beach and he spends all day morning and evening in water and in the sun. He is always burned to a crisp bc refuses sun screen. Loses surfboards fishing poles etc..he has a counselor but sees no need to work w him or apply any techniques to help himself function better. He will enter HS for a very short day this Fall bc he is so behind. He was a Star student. Its heart breaking to watch the" post war" destruction and collapse of such a great kid. Yes.... he is a teen but I am a teacher and have other children and this is extreme teen behavior. No drugs or drinking as of yet and we are beyond thankful. He is however unteachable and simply goes from one drama to the next. His arrogance and false bravado scares most kids away. We feel hopeless ! Started Intuniv low dose and he is also on nutritional lithium for moods and low low dose Zoloft 8mg. He is neuro sensitive and we see the effects of most meds pretty quickly but Doc keeps it all low bc he can have negative neuro psych reactions to so many things. I might up the Intuniv to 2mg soon bc no negative reactions but no change in focus either. ADD off the charts and OCD and now throw some ODD in there. Sad and scared for his future.
  6. My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that wonderful fighting advocate that these poor kids so very much need. I have two children. Both with difficult stories. Very similar to yours. Firstly, I will say there was no single organic reason for their fall . Everyone is different so for some its treat the lyme of mold and bingo the child heals. My oldest has the marks and we were told too that they were stretch marks . He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us? 1. Clean eating. They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B. UHG So we could not do much. When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish 2x a week (good for brain inflammation) We removed Gluten/dairy/soy. The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most. Huge difference for my youngest especially. He is also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet. 2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day. 3. Good counseling because even if its caused by something outside of themselves the chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters. As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared. WE used low low low dose SSRI and nutritional lithium as well. WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria. Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it. Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over. They are beginning to strengthen the terrain so that the genetic predispositions don't derail them at every turn. Keep searching, praying and never give up!!!
  7. DS 13 raged for some time. WE treated for Bart even though IGenx said nothing. WE used Amox/Azith and Bactrim 6 months. Rages stopped finally BUT two years of no school and post viral chronic fatigue. BUT who the heck really knows!! The most recent Immune doc says it was all due to Dysbioses from way too much antibiotics. I am NOT sure. I think the Bart cocktail did something to stop the rages that's for sure. To treat gut we then used Tinizidol (amazing drug) and dyflucan in short cycles apart from each other and began to heal the gut. Organic urine test helped us find the correct pro biotics and we removed all inflammation foods (Gluten/dairy/soy). THIS WAS HUGE HELP!!! Very hard at first but after a few months he claimed his brain calmed down. Immunologist believes that there is NO one organic issue but multiple. I suggest working on his diet (clean water, food and low trigger foods) That's if you are not already . Get him going to bathroom twice a day, good sleep and add a few anti yeast herbs perhaps. WE also removed Video games (more difficulty) but it also helped calm his brain once he slowed down on playing. As far as traveling anxieties that's tuff bc his OCD is thru the roof it seems. I packed pillows and blankets and fun snacks always on car rides to make the stressful car rides pleasant. Try for short successful outings so that his mind begins to trust the rides. Have the car rides end with a positive always . Perhaps go the surgical supply store and get a portable urinal for car to assist in need to go to BR. There is no logic or reasoning around OCD so its gonna take time til his anxiety drops. I am NOT going to say skip Disney but I will say that it is loaded with possible anxiety triggers. My son would rather walk thru a room full of glass than go to an amusement park when he was escalated. That's hard to say bc you may have good reason to go with the family and we mom's with PANS kids strive for NORMAL times so much. Not easy decision. Wish I could suggest an essential oil to be the panacea for his nervous system. All of the above helped calm our son's nerves "slowly" . You can try Chinese skull cap and or passion flower and also Pasque flower all in tincture form. Try one at a time starting out slow so as to not exacerbate. God Bless and hang in there!!!! :}
  8. Wow. So sorry. I will attempt to send you a message. Best we talk via phone bc too much here. Our son had a very similar presentation. The pain to watch this is unbearable I know! If I don't contact you leave me your contact info and if you like I can give you a call. For some reason I cant leave you a private PM
  9. Firstly, I am sorry you are suffering so. It must be beyond painful. I have a DS 24. He was diagnosed with sudden onset of tics and OCD at 6 but now we know it was PANDAS bc his younger bro has it too. Our DS24 growing up did OK as long as he ate no gluten and dairy plus a few other inflammatory foods (PLUS low dose SSRI's). But at 20 yrs old( being a straight A student always as well) he just fell apart . OCD thru the roof along with anxiety. He started hyper focusing on getting A's for fear of failing, everything began to overwhelm him and he began sleeping 15 hour days. I hired a great nutritionist, a therapist, immunologist and a psychiatrist. Only after I had him thoroughly checked medically for adrenal, thyroid and other possible causes, did we go more alternatively. How is your thyroid?? He pulled out of school and kept one class. He began a multi tiered approach. (Exercise, proper sleep, increased his SSRI, increased pure water, removal of inflammatory foods that can cause mental issues , added specific supplement's and some herbal tinctures that helped calm his nerves,plus lots of prayer) We found out that he had LYME and a co infection Babasia. Lyme's exposure for PAN's kids can really rock their world. We treated with specific herbs. He now is able to take two classes at a time. It is a mini Ivey school so not easy but he just modified his life greatly. He will now be done at 26 but its OK. His family is his support system and his amazing therapist. YOU are NOT an island and there is NOTHING to be ashamed of. If people don't get it completely that's OK but find a few that do and lean on them. THIS WILL GET BETTER> NO SHAME!!! everyone has something in life and this is yours. Sometimes it is a matter of an infection that rocked your world or perhaps your schedule just got too much for your nervous system and your OCD showed up big time. Get your nervous system down by cleaning out ur body, getting good sleep, simplifying your life for a while and BREATHING!! For us it's been 4 years of 'operation lay low" . Our son does get very frustrated at times but he utilizes the network of people that have carefully been put in place, he started taking better care of his temple and began to realize that there are many ways to DO LIFE! Thank you for sharing your story and I am so impressed with you going to school through all of this. Good grades or not it shows that you are a fighter!! Amen to that!
  10. Check for bartonella! Lymes co-infection. Our son raged and OCD out of no where. If he is young it could be he is entering puberty and that can rock their world as well. For us it was three long years and the fear is always there. We cleaned up his diet and gave supplements based on organic urine test and 23 n me test. Best thing I ever did!! His ups and downs now are mild compared to before (no soy, dairy or gluten) He tells us his brain is calm now. We found that he was depleted of B1 and B2 as well by the test results. I thought big deal when I heard that but big change once we started to supplement. Our immunologist claims that these children have innate immune response to various triggers depending n their genetic predisposition. This causes inflammation and the mental symptoms are a response to that inflammation.
  11. Hi If it;s just for the Insurance then i prefer NOT to do it. BUT if it will help him stay strong in school next year we will do it. Our doc has such a thick accent, it's hard to get thorough answers. You mention vax in the PANS world and hear horror stories. His immune system has improved with better diet and supplements for sure but his pneumonia titres? are very low. He has very little protection against that. At this point he is boarder line CVID but not there. NO SCHOOL three long years so not much exposure to illness. "FEARFULL"
  12. Our DS13 has been treated for PANS/ chronic fatigue/Lyme's for three years. Our insurance company requires us to vaccinate for pneumonia in order to meet the criteria they set OR they wont cover IVIG therapy for our CVID son. Our Immunologist who works with lots of PANS kids highly recommends it bc she says its harmless and could help protect him as well as help his case if we need to move to IVIG (so it will be covered). There is no way around it for CIGNA and yet so many parents have had bad experience with vac's. We haven't vaccinated him since a baby and limited then so really afraid ! but he has NO protection from pneumonia according to his labs. Dr J insists it will help in many areas and she has not seen any issues. UUUHHHGGG!!! Stable now for 1.5 years.
  13. DS 13 has been stable for 1 year. He has been out of school for 3 years so as a result little to no colds/infections/viruses for a good 14 months. He was treated for Bart/Pans with anti b's and herbal protocols.He is finished and healing. He has not had so much as a cold in 2 years since we pulled him from school. But he still has some immune compromised lab results. His immunologists wants him to do the vaccine test in case he needs IVIG for insurance purposes and also bc he has little to NO immune protection for pneumonia. I am afraid this vaccine will ROCK the boat. BUT doc feels that when he gets back to school again infections will follow so vaccinate over this summer is needed. So afraid it will start things up again. His IgA and IgG are on the low end but not horrible. On a side note he eats completely clean and strengthening his immune system thru clean eating and supplements was our plan.
  14. Hi I cant say that IV anti B will or won't help. I can say that our DS had both Bart and Pans. WE treated the Bart with three different anti B's for 3 months. But his gut took it hard and fatigue and disbioses set in creating many of the same PANS like symptoms. His nervous system only began to truly calm down (after 3 years) with specific vitamins ( organic urine test and 23 & Me test helped decide which) and diet changes. We removed gluten dairy and soy products. Dr H Jnouchi believes that many of these children have innate immune responses to certain food proteins. These response can cause neurological symptoms. Once her nervous system calms her tics should too. I avoided diet changes for years bc it was just too daunting to do with him. He finally did it himself and says his brain is finally calm. It took 3 months before I began to see changes. The two tests i mentioned showed that he needed B1 and zinc. we also dbl up on fish oils and specific pro biotics. There is NO one panacea. Its a multi prong approach. Those two tests will help you as you navigate. A good nutritionist MD can order them. The gut was the answer to calm my son. The terrain of your child will dictates how her body responds to Lyme/Pans. Read all you can on this site and don't get overwhelmed . It will take some getting use to because everyone seems to know so much but eventually you too will pick up. Quality sleep, nutrition and healthy daily bm's are very important as well. I prayed continuously because i needed super natural strength. God guided and we followed. Don't give up bc you are NOT alone!!!!!!
  15. Have you looked into Dr H. Jnouchi at St Peter's in NJ. She is an Immunologist, treats PANS and Panda's and the gut!! She also fights hard for IVIG w your insurance if she thinks you need it. She is NOT an LLMD but I don't know where you will get both in one doctor. She is in MOST insurance networks and her son heads up CHOPS immunologic dept. We have been with Dr T for several years. We go to both. We find him to be knowledgeable in many areas and he IS helpful with school letters and getting anti biotics if necessary. Dr T is very very busy and after your apt, it's not easy to get the office to respond promptly. I love him and his staff but we use Dr J more regularly. Good Luck!
  16. So sorry. It sounds terrible. My son had issues with walking as well. Lyme's and co infections can do terrible things to people with already compromised immune systems. Have you had a thorough immune panel done yet? How about any neurological tests done? Not saying that is what it is but odd behaviors and all of that I have heard of with Bartinella/PANS. You definitely need a lead doctor to help you diagnose some of those symptoms. Blood blisters and unable to swallow!!!?? Poor babies! The docs will guide you some of the way but you will be responsible to put all the pieces together. Dr T (pediatric Neurologist) may be helpful to at least direct you to the right type of doctor. Most of us here have a team of docs. Neurologist, Lyme's doc or ND's and many have immunologists as well. Its great when they all agree but many times you must play the middle guy and be in control. Perhaps a DAN doc can be helpful. It might be that if you begin to get answers to one of your children it might be helpful to understand the other child as well. Hang on!!
  17. She says they contraindicate. I didnt probe further. But I did ask pharmacy and they said probably too harsh on liver together.
  18. Everything you mentioned he has had in the past. Babs and bart were in the picture for sure and we treated Bart with three different anti B for three months. The new Immune doc it's enough and time to heal gut and get rid of candida. I am not sure if we should continue treating Bart and Babs or stop. The Babasia we have never really done meds only herbs for that. All seems to have calmed down for now but not sure if its just below the surface. The weakness and fatigue that comes and goes is the main concern for now. Having NO definitive answers is so painful!! NO definiteness for years!!
  19. Maybe try Dr R Trifelleti in NJ. He does some very good genetic testing and he will do both children. His labs are covered by insurance most of the time. Phone consults as well . He is $$ . Most likely you will NOT get a definite lab positive if it's Lyme or Bartinella related though. Protozoans and microbial' s may be a piece of this puzzle for sure. There are probably a few things going on with both children and it's a puzzle that you will have to work through. 23&ME test might be helpful. We used a pace in PA. The ND is Bob Miller and very knowledgeable. Don't trust the medical doctors to give you all the answers. You are the captain of this ship. God Bless!
  20. Our son is on Tinizidol and Diflican rounds and we are told to absolutely NOT give together. One round of anti B and then wait a few days and start the ani fungal. Call the pharmacist or the prescribing doctor and they should absolutely know!! I believe they are NOT to be given together as well, If that is the case, you most definitely should have been informed and I would let my doctor know for sure!!! Hang in there!
  21. I get the D Lactate concern. I gave too much pro biotics i feel to my son as well during the high anti biotic phase and he got an over growth of acidophilis in small intestines so for six months we gave pro biotic w NO acidophilis. Now back to giving Mega spore. That stuff is strong and our ND doc wants him only on 1/4 pill a day.I also give a few more brands with different strains. He is 12. You seem to have the diet down good and it seems that she has PANS with Dybioses possibly from candida. You can't really test 100% for Lyme's or co infections bc there is no definitive test out there. The 23&Me test helped us with the Methyl piece for sure and the Organic Urine test helped see the status of his gut. His immunologist does NOT support ANY of those tests. She laughed at the Igenx of course. Its SOOOO crazy. My heart goes out to you because you seem like a doer. I am and I am being forced to wait between treatments and I must say I am finally seeing some progress. Immune doc says Candida and Dysbioses takes many months to treat. I am NOT a doctor but her symptoms are similar to ours and that's a piece of our diagnoses. We have a top Immunologist working on that piece who believes the antibiotic use is necessary but over used in the PANS world. I feel like we have no choice half the time!! The children are suffering !! Our ND wants to treat him more for BART bc he feels that the Neuro stuff is most often microbial or parasitic. My son also would get little impetigo patches on his face often. Also belly aches and yes the exact same fear presentation. "lock the doors.....the teacher hates me and wants to eat me" What??? He was an overly independent confident kid with straight A's. This hit when he was 9 and we have NOT be back to school since. New Immunologist feels that Tinidzidol and diflucan cycles spread out will gradually heal the gut along with NO dairy or Gluten and that will be the answer. She feels It all stems from the gut. Innate immune responses she calls it. The ND still feels its Bartinella as well but we are waiting it out and giving herbs for that just in case and stopped all anti B for now except these once a month Tinizidol/Diflucan rounds (NOT given together). Again, I am not a doctor and this is only our protocol and every child is very different. Hang in there. Our son is less afraid now but the chronic fatigue remains. He did NOT tic but our older son did. Super low- low liquid Zoloft helped us. 4MG. PLus Stephan Buhner herb protocol for Bart as well. Also doing lots of Detox like Pinella/Burber chlorella and charcoal. God Bless!!! You sound strong and seems like you are doing the best you can.I spend many days in prayer to get me through.
  22. I am reading up on this and when I see Julie McIntyre my herbalist , I will get some herbal remedies to address these. Also ordering Blue Air for his room. The one they recommend in this site is way $$. Do you have any thoughts about a room Hep?? He is in his room most of his days so this might really help. I did NOT do any other mold testing in this particular home other than basic. But again, we have moved around to several homes since this all started.
  23. No to most of these. I would say just overall no energy, super tired and weak. All things overwhelm him. Then for a few days he is normal energy again only to drop into this fatigue again and again. O yes to answer your question as to times of day most fatigued: he really can't do much most days (good or bad days included) before 1: 00pm Forget anything in the morning at all. He was diagnosed w POTS as well but again i feel this is a symptom not a diagnoses. Thank you!!!
  24. No to most of these. I would say just overall no energy, super tired and weak. All things overwhelm him. Then for a few days he is normal energy again only to drop into this fatigue again and again.
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