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  1. Today
  2. Thank you - plus won't go near Miralax 😀
  3. Maybe the MAPS doc can order the Cunningham Panel (bloodwork). That’s how my DS got approval for IVIG. Also, be sure that Jonah doesn’t take Miralax. For my DS it was the tipping point to put him in full blown encephalopathy. I’m trying to get the word out because pediatricians prescribe it like water.
  4. Yes they should however up to this point they are set on the epilepsy diagnoses however non of the meds for epilepsy have worked. Also he was on a dose of 8 MG daily of Lorazapan and he still has his once a month seizure. I am now started working with a MAPS doctor and waiting to see a neurologist local to me but have no trust in traditional medicine any more.
  5. Especially with the seizures, they should consider encephalitis!
  6. Thank you and I appreciate the hope...hearing from others that can actually relate is priceless. It's the same with his "epilepsy" most doctors just do not want to hear that maybe they have mis-diagnosed here. However the main children's hospital is just like the DMV, take a number and hope you get served that same day!
  7. Yesterday
  8. My first thought about your situation is that PANDAS/PANS is almost always dismissed when a child is on the so-called spectrum. My DS had sensory issues since he was an infant, but had his first major onset of PANS at age 8. He was then diagnosed with Autism and ADHD. His symptoms (sensitivity to odor & sound, lack of frustration tolerance, inability to focus, & OCD) turned exponentially worse overnight. If he already had Autism, this was not the natural progression of that condition. We also took our DS to many “experts” at a renown children’s hospital in our major city. PANDAS/PANS was never brought up, although I clearly expressed that the behaviors were abrupt within 48 hours of dental work. After I found out about PANDAS and directly asked the doctors, it was dismissed without running any tests. After 3 1/2 years, we were finally able to find a rheumatologist at the other major children’s hospital in our city who was willing to give DS 30 days of antibiotics. At this point he was completely debilitated and unable to attend school for several months. Miraculously, 90% of his symptoms went away for 3-4 weeks. Doctor gave him lower prophylactic dose of antibiotics for next 6 months, but he began to decline about a week after high dose was discontinued. Rheumatologist refused to refill higher dose. Symptoms became life threatening (refusing food and water) and he ended up back at first major children’s hospital. I was told it was a coincidence that DS went from severely mentally ill to “normal” for the time on high dose of antibiotics. Ultimately we were told by 2 different Integrative MDs (not affiliated with children’s hospital) that DS had Autoimmune Encephalitis. He has been receiving monthly IVIG for 20 months, and fluctuates from 80-90% symptom free. I’m sorry I can’t recommend a doctor in your area, but did want to give you hope that your son can improve even though he was undiagnosed and untreated for so long.
  9. Hello, I've read through this thread and have tried to pursue Dr. Van Mater at Duke for my daughter, who has been suffering with PANs for the past 5 years. Her doctor and I have been searching for years, trying to treat for various things, and finally landed on this diagnosis (Cunningham Panel came back positive for all but one marker). The problem is that Duke said we have to submit an application for approval. My dr submitted the materials, and they denied us admittance into their program to treat AE. My daughter was never observed, it was based on the application. So, I moved on to a Dr. O'Connor at AAIR in Charlotte. She took our money and started my daughter on antibiotics and ibuprofen (she is already taking a ton of supplements including a lot of anti-inflammatories). She said the next step is steroids, then IVIG. She does not submit to insurance, which I'm familiar with. What is difficult, however, is her office staff is very unorganized and unaccommodating. I've asked for a receipt with codes so that I can submit to insurance for our in office visit (which cost $1200). They are unable to provide me with a receipt that has procedure codes so that I can submit to insurance. So, after going around in circles with this doctor and her office, I am wondering if I should try Duke again and be more persistent. Or are there other doctors in the area now that provide PANs treatment? Does Duke do IVIG and does any of it get covered by insurance? Are there any other treatments offered there or anywhere else? Or is IVIG the most effective treatment used? I appreciate any information you can provide or point me to. Thanks!
  10. Hello Everyone, Brand new to this forum and honestly believe I may finally be going in the right direction. After 2+ years of ER visits, doctors visits, meds, meds, meds my son is in a very severe condition. Past 2.5 years with my son Jonah have been a nightmare and nobody ever mentioned PANDAS/PANS in all that time. For 14 years Jonah was a loving life kid, swimming, playing, beach lover until something took all this from him! (Jonah has been non-verbal since the ages of 3 and is now 17, lives near Palm Desert, CA) I recently purchased the book "Your Child Has Changed" and oh my goodness I have been saying that for years to death medical ears. The significant regression in my son is so crazy obvious and yet I often feel powerless to help him. Looking back I can recognize that Jonah did suddenly develop OCD when he couldn't walk normally anymore completely out of nowhere. He would need to touch posts, walk backwards and forwards frequently and would freeze often at cracks however all the "experts" told me relax it's just another autistic trait. So I did, for a while...and now 2.5 years later Jonah cannot go anywhere without serious self injury, panic attacks and massive anxiety. Last 2 years I have ... Worked with child Psychiatrist with over 20 years experience at one of the largest children hospital in our area prescribe a ton of SSRIs and other brain meds to no avail. Jonah started having seizures 6 months later but only once every 3 weeks on the dot! No seizure medication has ever altered frequency. (In fact most of the time the seizure temporary stopped the OCD behaviors and made his symptoms less severe) 2018 UCLA psych "experts" hospitalized hime for 4 weeks put him on massive amounts of Prozac and sent Jonah back to me much worse than he came in. 2019 Sutter Psychiatry in Sacramento performed ECT as his aggression during transitions was getting too severe for anyone to handle - didn't help his anxiety or OCD at all. I feel very angry at the medical field and (annoyed at myself) because my son is so severe and now incapable of basics tasks he could do years ago and yet a possible diagnosis exists. I have now started working with a MAPS doctor and getting hair samples, labs tests started) but my fear is that Jonah could have had PANS for close to 3 years now. Where do I go from here? There is a place in Irvine, CA says they diagnose PANS https://www.integrativemedicineoc.com however have left them 3 messages and no reply. His current doctor has not even heard of PANS 😞 Jonah really needs some urgent help as his life is wasting away.... any advise would be greatly appreciated.
  11. Last week
  12. Hi , I am a support worker with a client desperate for medical assistance with PANDAS. We are on the Gold Coast, Queensland. Is anyone able to please send me the details of the doctors mentioned above ? Thankyou , Josh
  13. https://aspire.care/?fbclid=IwAR1YYP90jGH4uQ4734Sbp4F_KkPiDQXqPhCMaUDH8xYlfi7dYgITsCianIw This could be really helpful to people new to PANDAS. It's a well-done site and easy to navigate. Acronym stands for Alliance to Solve PANS and Immune-related Encephalopathies
  14. I know exactly what you are feeling. I spent day & night trying to find hope, trying to find anything to help our son. I was very sad, so scared & very angry some days. I prayed daily God would take it from him & give it to me. I didn’t want to talk to anyone about it either & I was extra protective of him. I was so thankful I found the post regarding oils. It gave us our son back emotionally. He struggled so much at school. I also had a talk with all the parents we knew from school. I explained to them what he was dealing with and asked them to talk to their kids(his close friends) & explain to them he can’t control it & how hard it was on him for everyone to constantly ask what was wrong with him. They stopped asking & they actually started watching out for him if someone was ugly too. The oils helped so much with his emotions & also helped him relax more at night. I recommend the lavender & peace and calming at night. The valor promotes courage & strength & along with stress away helps to relax him at school without making him sleepy. The vetiver helps to relax their brain/mind, again without making them tired. I also wanted to mention that we also tried the magnesium supplements, but stopped after his bloodwork showed he was not deficient on any vitamins/minerals. I know what you’re feeling & you’re not alone. I now tell our story on Facebook & have had people reach out to me also. I once felt like I shouldn’t talk about it & that no one would understand, but it helps so much to reach out like you have. We need to educate each other & share our stories & show others that there are more natural approaches. As my husband mentioned earlier, I also recommend you meet with a neurologist just to get clarification. We had bloodwork to make sure he was not missing key vitamins & minerals. The Guanfacine tablet does make a difference. Our son is proof that it is possible to have tics & still have a happy, normal life. I am here if you need anything, or have any questions.
  15. It’s amazing what you described here. The symptoms you describe are the exact tics our son had. We find that the tics move around or show up at different times in different areas. Now that we have it under control and when he eats a little something he shouldn’t the tics start in his stomach as you describe and a head nod until we can get it out of his system. We know your concerns of pain and other kids. At its worst our son could barely walk as he would take a few steps and he would stop and one side of his body would seize and shake with his tongue sticking out. Yes some kids are cruel and my wife made many phone calls to parents explaining our situation and to please speak to their kids. It was the hardest thing we have ever dealt with. The worst days like that we would keep him home from school. After a while our son would tell us the amount of pain he was in due to his body straining and the headaches he was getting. He looked as though he had MS when he walked. We had him tested for all of this and came up negative. Oddly enough I spoke in depth with someone who’s brother was diagnosed with MS for over 20 years. At his worst the doctors told the family to monitor his diet and they found an organic natural diet helps. The family took turns staying with him and cooking organic meals for him. They noticed in a matter of weeks that his MS symptoms were dramatically lowered and within a year all symptoms were gone and doctors tested him and said he no longer has MS. Supposedly there is no cure for MS.... They did exactly as we did. Essential oils and diet. Sorry to speak of all that but I found it amazing the similarities. Our son was also 8 years old when his tics started. Almost exactly 2 weeks after his 8th birthday. As you research you will find testimony that those that are diagnosed with tics or Tourette’s almost always happens when a child turns 8 years old or somewhere very close to that age. I’m still trying to find out the answer as to why that is. Thanks to my wife’s never ending search for answers other than drugs or no hope answers from our doctors she came across the use of essential oils and later about diet related symptoms. Once started down this road we both tirelessly researched daily and nightly. Ultimately led us to this forum to learn and share our story. I recommend meeting with a neurologist or specialist to at least rule out something we may not know. Otherwise I feel strongly the steps we have mentioned will drastically help and should see noticeable difference in a couple of weeks. To help sleep at night use lavender essential oils. If real bad use more. It helps with relaxing and falling asleep without use of drugs. I will have my wife post more info on here as well a little later. Hang in there!
  16. Thank you so much for replying to me. I really appreciate it. It is very hard to find positive updates on the web. My daughter is 8. She started a very mild throat tic about eight weeks ago. All information said it would pass and not to draw attention to it. So we didn't and it did pass. Two weeks after the tics came back but this time (about 10 days now) with the frozen limb/tongue ones. Then locking her hands like a dog begging and stamping her feet. Also blowing. Her latest one is sucking her stomach in and out which really hurts her after a while. It feels like there is an alien in my child. It is so hard to watch my usually calm, sweet child hurt like this. She knows she is doing it. I worry about her when she is out of my sight. Is she doing it in front of her friends? Will they make fun of her? How can this strike so suddenly at this age? How will this affect her confidence? What will life look like for us from now on? These are the thoughts racing through my head every night while I toss and turn. She usually gets worse at night which doesn't help. She does have a dairy intolerance so she was low on dairy anyway. I figured no harm to try the gluten until I wait to see a specialist and we are trying to give her mostly natural foods. I have started since Saturday supplements of: Magnesium, Probiotic, Omega 3, Vit B/C/D. I also have a relaxing oil that you use on the tongue. I will try the oils you recommended. I am so glad your son has shown such improvement. Well done to you and your wife for figuring this thing out for him. I am sure it wasn't an easy journey. I hope to be in your position this time next year. Thank you again for replying and for your wife for updating. I really needed hope today.
  17. Hi WorriedMum, My wife and I know exactly what you are going through. My son in the beginning had similar facial seizure and tongue sticking out. It would lock in that position for a few seconds and repeat the process every 10 seconds or so. I’m so sorry your family is going through this and especially your daughter. So many people don’t understand how this affects the entire family. How old is your daughter and when did her tics begin? Hopefully you have read our posts above and see the steps we have taken. We have not used a jasmine oil although the oils we use might have some jasmine mixed in but I’m not sure. Of the oils we use I personally believe vetiver is the most effective. But they are all natural and can’t hurt so by all means I recommend trying different ones and monitor results. I highly recommend using good quality oils as they do vary of purity and potency. Cheaper ones are not as pure and effective. Essential oils I believe really are helpful. However I strongly believe the biggest help is diet related. We had to start from scratch and monitor our sons diet and watch the effects of foods and drinks. Processed meats are the worst. Especially hot dogs. They trigger the worst of his tics. You have to consider all ingredients in your daughters diet. From artificial sweeteners, food colorings, msgs, gmo’s, preservatives, etc... High fructose corn syrup is another ingredient we stay away from. We have a completely natural diet or as close to a natural diet as we can. Our son does not have gluten or dairy problems. He drinks milk and eats breads. He eats a peanut butter and jelly sandwich almost daily (natural peanut butter and jelly). However if he eats a regular cheese pizza he will break out in tics. But for some reason a gluten free pizza does not bother him at all. No idea why. That’s part of the process of removing and reintroducing foods to your daughters diet and monitoring their effects. He is also still on his medicine guanfacine. We have slowly cut his dosage to a half a pill. It’s a very low dose. We cut the pill in half and give it to him every night after dinner. My wife crushes it and puts it in a spoonful of milk or water. Over the summer break while school is out we tried recently lowering his dose over a course of time a quarter dose and then removed it completely. A few days after going to no medication we noticed some of his tics returning. Not anywhere close to as bad as they were. But enough that we made the decision to put him back on half a pill. He’s pretty much back to normal. Why some people are sensitive to not non natural or non organic foods or chemicals, I don’t know. It probably means it’s not natural for humans to consume chemicals and additives so commonly found in our food chain. For our neurologist to say foods have nothing to do with my sons tics was shameful. It is known that chemicals can have affects on your neurological system so why would they think eating chemicals added in our foods would not have similar effect. Too many people think it can’t be as simple as changing your diet or environment. But in most cases it is that simple. I’m not saying that is the case 100% of the time but by far most. I truly hope this is the case for your daughter and you see results from your research and diet monitoring. Let us know if you have any questions and by all means post any updates. What you find might help someone else here. I’m happy to say that my son is still doing great! He recently went to a friends birthday party a week ago. Even with us explaining not to have birthday cake. He did eat a small piece of cake. No surprise to us he showed signs of tics. Nothing really bad. But it took a couple of days to get out of his system and he seems back to normal. There is hope! We all look forward to hearing from you!
  18. Thank you so much for your update. My daughter has started ticcing recently and we are out of our minds with worry. I can’t sleep and it is all I think about it. She sounds similar to your son. She has a mix of tics and the most scary one looks like a seizure where she locks into a ball with her tongue sticking out. It can last up to 40 mins where she remains in that locked state. The less scary but still worrisome tics are motor and vocal. I find myself watching her all the time on high alert. I am so worried about her. We have removed gluten and dairy from her diet but it has only been a few days. I am interested in the oils. Did you add Jasmine in the end?
  19. Hi Dawn, does your son have any other symptoms ? Sometimes tics are one of many symptoms experienced, and sometimes tics are the sole symptom. Symptoms may help you focus on which next steps will be most beneficial for you. I would recommend seeing an immunologist to rule-in or rule-out any infectious disease with some detailed blood work on red and white blood cells.
  20. Hi Dawn, You've taken a number of sensible approaches and made a significant effort; I'm sorry you haven't hit on the answers you need yet for your boy. It can be complex to sort everything out. For example, and I'm just throwing this out there for the concept--the diet could have been helping and maybe your community sprayed for mosquitoes and that triggered the neck tic. I'm not suggesting this happened--but it's why it can take patience and investigating to figure things out with environmental approaches. Let's see if others come up with ideas for you as far as physicians. In the meantime I'm sending a private message since you said you are willing to travel. Sheila
  21. Hello! My son is 8 years old and has been experiencing a vocal (dry cough) tic for about a year now. We have been (like most I'm sure), just hoping it would pass. Over the past 3-4 months several other tics have come and gone, including a neck stretch and just recently an almost constant "f" sound...which sometimes he ends under his breath with the four-letter word. This has since passed and he says that he can now control that one. For me, this is was the most worrisome in terms of social situations and school. Anyhow, we have taken him to an allergist who did an entire blood panel on him and found an allergy to dust mites. We took all the necessary steps to making sure our house was mite free (mattress covers, removal of carpet, air filter, etc...) and the dr. prescribed an inhaler. After about 1 month of the inhaler treatment, we realized the tics were still there, so we then turned to a nutritionist who did an MRT food sensitivity test on him and we removed soy, egg, dairy, and gluten from his diet for about 3 weeks. Again, we didn't see much improvement...during this time, the cough tic went away, but the neck stretch tic emerged. I just took him to his pediatric doctor who mentioned Hazidol as a treatment and referred us to a neurologist. We are hoping to not go that route. I have the Natural Treatment for Tics book and have read it cover to cover. I would LOVE to take my son to a doctor like some of the other families have described, but I am just unsure about how to find one that is inline and has experience with the type of holistic approach we would like to continue to take. We live in Michigan and I'm wondering if someone has a recommendation for a naturopath or environmental doctor that might specialize in Tourettes and Tic Disorders. We are willing to travel and also live about 1.5 hrs from the Chicago area. Can anyone recommend someone that could help us? Thank you! This forum has really been a lifesaver on the many sleepless nights I have spent scouring the internet for answers to help my son.
  22. Earlier
  23. What strength and brand of cbd oil? I used cbd isolate with no diff..sending back for broad spectrum.
  24. Q: So are you looking at genetic vulnerability? What are the long term goals of your study and how might it affect kids with these conditions in the future? A: Yes. The “holy grail” of a genetic study would be an “if and only if” genetic variation as has been found for Cystic Fibrosis (CF), where if you have the genetic variation you have the disease, and if you don’t have the defective gene, you don't have the disease. But autoimmune diseases don’t seem to be like that. Instead, dozens or hundreds or maybe even more than a thousand genetic variations seem to increase or decrease the odds of getting the disease/disorder/syndrome. Nobody (that I know of) has established any genetic variations associated with PANS, and for PANDAS, there have been (as far as I can find) 3 published studies (all from Turkey), that haven’t yet been replicated. The one didn’t replicate in our pilot study (that doesn’t prove it’s wrong; different ethnicities could have some different causal variants), the other I have concerns on the stats, and the 3rd I couldn’t test because the variation isn’t called in 23andMe (or AncestryDNA). PANS and PANDAS is way behind other diseases and disorders in laying this genetic groundwork. Once the genetic groundwork is laid, and replicated, experts in biological pathways need to go at it, to figure out what each genetic variation’s role is, if any, to understand which processes in the human body are affected. Here is an example of some of this kind of biological pathway discussion: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3654249/ . We don't have all processes and pathways in the human body mapped, so this step can't be timelined. I am not well informed around this part of the puzzle, but I can easily imagine it being years or decades before there are significant understandings established. Or, we might get lucky and stumble across something sooner rather than later. Then, the final phase would be treatment development, which could also be a long timeline. There is nothing innate about genetic studies that dictate what ultimate treatment could be. They don't have to beget pharmaceutical interventions, though our financial and academic structures do seem to be geared that way. But still, there is no reason a genetic understanding can't spawn a dietary or other non-pharmaceutical treatment solution. These details tend to make the long road feel overwhelming, and there is still so much more to the overall story. But as an example, the discovery of the CF gene (in 1989) has over the past 30 years greatly extended the life and comfort of those with the disease (http://www.sickkids.ca/AboutSickKids/Newsroom/Past-News/2014/25-years-later-the-impact-of-the-cystic-fibrosis-gene-discovery.html). With PANS and PANDAS, we need to get going. There is one other nearer-term possible benefit from this kind of study that I have stumbled across, an idea inspired by the very Turkish study whose math bothered me. It's the idea of a predictive model based on genetics: a long shot, and bound to be controversial (23andMe is "not to be used for diagnostic purposes"). This would ultimately require more data than I am getting here now, and likely more SNPs of significance than I can show in this study (which is 10, if luck is in the wind), in order to work even half-decently. But I have to at least poke at it.
  25. So the gcmaf treatment is to boost the micro(somethings) that help the little Pac-Mans eat the Nagalase which goes up in count when viruses, bacteria or things like cancer are going on. Basically it’s to help the immune system work better.
  26. In the thread @cmac posted is this link, though maybe you already checked it? It's how we found our practitioner. Agree w/others, if you can't find someone in TX, try to get a phone consult out-of-state to start with and get more blood work. http://pandasnetwork.org/us-providers/
  27. Q: Can you use AncestryDNA raw data? A: We did use ancestry for the pilot study, but it doesn't call 7 of the 10 SNPs I am looking at this time around. Because I am going to stop when I get 70 data sets, getting Ancestry data sets will mean less data for those 7 SNPs, which means weaker results for them. So, we won't be taking AncestryDNA data sets this time.
  28. Maybe a PANS/PANDAS specialist could do a Skype/phone consult and at least give you a script for all the blood work? Also this thread has info on doctors people here have seen and I think various states are mentioned.
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