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HopeinHIM

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HopeinHIM last won the day on July 29 2015

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  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
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