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Everything posted by HopeinHIM

  1. 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 a
  2. 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
  3. 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.
  4. 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
  5. 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. Wha
  6. 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
  7. 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
  8. 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 gr
  9. 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
  10. 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"
  11. 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
  12. 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 fe
  13. 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 respon
  14. 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 of
  15. 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
  16. She says they contraindicate. I didnt probe further. But I did ask pharmacy and they said probably too harsh on liver together.
  17. 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
  18. 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 $$ . Most likely you will NOT get a definite lab positive if it's Lyme or Bartinella related though. Protozoans and microbial' s may be a piece of this puzzle for sure. There are probably a few things going on with both children and it's a puzzle that you will have to work through. 23&ME test might be helpful. We used a pace in PA. The ND is Bob Miller and very knowledgeable. Don't trust the medical d
  19. Our son is on Tinizidol and Diflican rounds and we are told to absolutely NOT give together. One round of anti B and then wait a few days and start the ani fungal. Call the pharmacist or the prescribing doctor and they should absolutely know!! I believe they are NOT to be given together as well, If that is the case, you most definitely should have been informed and I would let my doctor know for sure!!! Hang in there!
  20. I get the D Lactate concern. I gave too much pro biotics i feel to my son as well during the high anti biotic phase and he got an over growth of acidophilis in small intestines so for six months we gave pro biotic w NO acidophilis. Now back to giving Mega spore. That stuff is strong and our ND doc wants him only on 1/4 pill a day.I also give a few more brands with different strains. He is 12. You seem to have the diet down good and it seems that she has PANS with Dybioses possibly from candida. You can't really test 100% for Lyme's or co infections bc there is no definitive test out there.
  21. I am reading up on this and when I see Julie McIntyre my herbalist , I will get some herbal remedies to address these. Also ordering Blue Air for his room. The one they recommend in this site is way $$. 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.
  22. 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!!!
  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.
  24. I have done the 23&Me for Methylation issues and we addressed some viruses with herbals but the Mold is something I only hear about. It seems daunting to me. Since this health debacle, we have moved several times so I just assumed that all of the homes couldn't be causing mold issues w him. I had our first home completely looked at when this first hit our son. I purchased a BlueAir room cleaner that takes out mold. That placed in his room as well. Are there a few good top products you would recommend for mold?
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