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  3. Just the information I was looking for, thank you. She is not on antibiotics yet, we have been given cbd oil and redipred which is slighttly helping but obviously needing to address/support those vital pathways. Will have a look at that product now!
  4. Itchy skin is a symptom of a stressed liver. Also extreme behaviour is a sign of a stressed liver. If your kid's body cannot handle the infection, these symptoms might be displayed. Antibiotics might help release the stress, but you can also support the liver in several ways. I have used a product called "Liver Balance" from the company Pure Body Institute with good success.
  5. Last week
  6. Hey everyone, new to this forum but unfortunately not new to PANS. MY 5 year old is currently going through her second (major) flare and it's as awesome as you can imagine. One thing that's popped up this time is she is constantly complaining of her skin being itchy, though no signs of irritation anywhere. Usually when her anxiety is quite high or trying to get dressed (sensory issues extreme). Has anyone else encountered this?
  7. Hi MLee, I was never able to find it but, thank you to Chemar. I will search for Carlson Labs.
  8. I saw that Carlson Labs makes a B-6 Liquid (4 fl oz -120 ml) sells around $13 on most sites
  9. Tropea22 did you ever find a liquid B6 vitamin?
  10. TeamTyrion thank you so much for sharing. What a journey you’ve had. How lucky your son is that you were so committed to helping him. And your story inspires hope! Thank you.
  11. Had house tested bad Theron had moisture. Cleaned it up, and the ac vents tested positive for aspergillosis. So we had all new duct work and a halo put in. It’s basically an ozone mold and bacteria killer. Still dealing with this.
  12. Earlier
  13. Just to add - I would definitely recommend the T & A removal. I believe it made a big difference both in ridding him of an embedded infection and preventing further ones.
  14. I completely understand with needing to hear from others. We tried so many supplements over the years. We also did neurofeedback (muscle testing) and cognitive behaviour therapy with a child psychologist. Looking back the most important things that helped were - clean diet (real food not processed) with low oxalate foods, tonsil and adenoid removal, and learning how to "fight" his ocd and "worry brain" with common sense techniques that were given to us by the psychologist. Those techniques continue to be useful to this day, but only when he's not in a flare. When in flare it's too hard - his brain is inflammed and only abx will work. Tamar Chansky's books are helpful in understanding the talk-back techniques. I would also say that learning to re-wire his brain with music lessons also helped. People seem to look at me sideways when I say that but I truly believe it made and continues to make a difference. Another book I recommend is: The Brain's Way of Changing by Norman Doidge. It's been a long journey for us and we understand that our son will always have tics and worry brain issues to some degree, but they can be managed and he is living a great life. He excels at school, has many friends, participates in sports, camps, etc and is very happy about his life.
  15. Thank you TeamTyrion, that is a consolation. I really appreciate hearing others stories on here...it gives me hope. I worry so much about my little guy. Thanks for sharing your story. What sort of treatment did he do if you don’t mind me asking? Our doc is recommending tonsils/adnoids out first.
  16. Yup, so much of this is familiar. our son also very sick from an early age to about 3 years. He also enjoyed being around kids at a young age but struggled to actually interact with them. He did insane amounts of imaginary play. Really, so many similarities. My son's onset was at age 5.5 but it had been building it seems. Things were terrible for about 1.5 years, then he got better but still had issues. He is now 13 and is doing great. There are still tics and the occasional ocd but nothing as horrible as onset. We have a Pandas specialist who treats him with abx when needed. If it's any consolation he has many friends now and is able to interact with them very well. Playing hockey gave him a lot of confidence. He misses face-to-face contact with all his friends right now.
  17. Our DS is 4.5 yrs old. He had a severe speech delay at 2. He is now in the normal range for expressive and reception speech but is moderately delayed in his social use of the language. Dr K is 90% certain that he is a PANDAS patient. He has many of the symptoms but I feel some of them cross over with ASD. His Cunningham Panels (done twice) were extremely elevated in the Anti Tublin, borderline in Cam Kinase and borderline Dopamine. We did some Armin Labs testing and his CD57 numbers were so low that the lab made a note that he must be suffering from a chronic long term infection. He got sick so often from the ages of 4 months - 4 yrs i felt like I never left the house. And then randomly we gave him Amox for the first time in his life at age 3.5 yrs for a suspected ear infection and all of a sudden I’m googling “can ASD like traits lessen with the use of anti biotics”. Everything points to PANS/PANDAS except his social communication interactions. He is so interested in being around other kids but sometimes he just zones out and is on another planet. He will often miss when peers and adults speak to him and often struggles to get his words out. Sometimes I just find him doing circles around the periphery of his friends playing...keeping an eye on them but whispering to himself and engaged in some solo pretend play. He is really into pretend imaginary role play. It can be a little obsessive. Anyway does any of this sound familiar? Any feedback or sharing would be so welcome. We are cautiously proceeding. But as you know all the PANDAS/PANS treatments are intense and aggressive and so worth it if you know what you are treating. Just an FYI we have had our son evaluated for ASD and it came back as no diagnoses, but some traits.
  18. Thank you for taking the time to post and help others. We appreciate you!
  19. Hi, I am experiencing the same here. Schools are close due to the virus and my 7 year old has been home ever since the lockdown. His tics had almost diminish and I though we almost reached the end of the road however it suddenly came back, now accompanied by a vocal tic. The blinking tic had gone heavier. I was so devastated.
  20. This is such wonderful information! thank you!
  21. Hi! Last week my son was sick with a stomach bug for 1 day. Prior to being sick, his blinking tic and humming tic had gotten very mild. Since he’s been sick, he’s having a flare. I’m wondering if I should be doing some probiotics for gut healing from being sick. Could that be causing the flare? Has anybody had this happen to their child? If so, what worked for you? thank you!
  22. Anybody have experience seeing Dr. Kriwinski in Cleveland? If yes, what was your impression and how was the experience. Thanks.
  23. Hello! I wanted to share some things that I think may be helpful to understanding a part of the puzzle, for some, with Tourettes and also OCD. Many years ago I was an active member on this forum. My son, Daniel, has Tourettes and I have OCD. The very good news is my son is now 19 years old and honestly you would never know he has Tourettes. He is doing amazing. Once in a while I see a little eye tic but that is it (but barely only when he gets nervous. What a difference from when he was 7 to 10 years old). But I want to share with you some insight that may help some of you that I have learned. I know there is so much information out there and our bodies are so complicated that it is not a one size fits all issue. I have found out that there is something in our family that is definitely an issue that was influencing my son's tics and also my OCD. It is histamine intolerance. Meaning that in my family our bodies are getting too much histamine in our bodies and it is affecting our neurotransmitters ultimately in my son's tics and for me obsessive thoughts. There are many, many articles out there about histamine intolerance and what to do but this is a tiny synopses. Histamine occurs naturally in many foods. Also, some people just do not have the right enzyme base to break it down or their bodies are just poor at processing it and what happens is your get this build up of histamine that ultimately changes the way your neurotransmitters are working. Histamine actually has multiple functions in the body not just affecting the neurotransmitters. Just do a Google search on "Histamine Intolerance or Mass Cell Activation Disorder" and you will get lots of info. When I was doing my research many years back for Daniel I kept coming back to histamine being a problem and how it affects the neurotransmitters (especially how it affect dopamine which drives the tics). So I have known about this histamine issue for some time but now it has become even clearer for me. When Daniel was younger I would give him supplements him B6, magnesium taurate, glycine (which helps with the neurotransmitters), zinc (do not take on empty stomach), vitamin c. These things all really helped him but I really did not understand why back then. So to take this a step further about 3 years ago my OCD was getting bad enough I spent the money and went to the Mensah Medical (I live in Arizona but they come here periodically but they also do phone consultations. They are based in Illinois) and it was verified that I indeed have this histamine intolerance along with a copper overload. I have been on a compound the Mensah Medical had formulated for me to lower this histamine response and deal with the copper overload and I feel soooo much better I cannot tell you. It really made a difference. The Mensah, unfortunately is pretty expensive, but I learned a lot and I learned that these obsessive thoughts (that I would take to personally that it was a reflection of who I was as a person) is something I could now separate myself from and realize this is part of a situation where my body is processing things biologically incorrectly due to this histamine issue/copper issue and it was not a reflection of who I was as a person ( OCD obsessive thoughts always goes after what you value most in life which is the most frustrating part of OCD). I was at the point back, when I decided to go to the Mensah medical, where I was obsessing about obsessing if that makes sense. I am Christian and I had prayed for an answer for my OCD and through a series of events I got my answer and it was the Mensah medical. So fast forward to now and my daughter who is 15 has been getting depressed, has bad migraines, and complaining that her stomach hurts all the time. It dawned on me the other day about this histamine issue and I thought I wonder if this could be going on in her but in a different way (when I started researching all her symptoms are symptoms of histamine intolerance). So the last few days I started giving her supplements to control the histamine more in her body B6, Magnesium Taurate, Quercetin, B2, Zinc, and NAC and also stopped giving her foods that are high in histamine and guess what her stomach is feeling better, her mood has changed, and her headaches are better! That is just after a few days. My other son, Zach, he is 18 and he has pretty bad digestive issues and I think this is what is going on with him too. That is the interesting thing with this histamine intolerance is it can affect people in different ways. So to tie this together even more, this past year 4 of our family members, one being Daniel, decided to do " 23 and me" genetic testing. Well if you purchase the 23 and me kit that shows your health traits you can see a lot of genetic things that could influence your health. When you pull up the "23 and me results" they show you all kinds of DNA health traits. But there are some DNA things they do not show and I found a website called Genetic Lifehacks. The lady who started this Genetic Lifehacks has an article that is called "Histamine Intolerance and genetics check your 23andme raw data". What I did is I opened up Daniel's 23 and me results (again you had to have the health traits ordered not just the ancestry results to do this") and also had this webpage up at the same time (I toggled between the two). The lady who created this has a list of links you can click on, in this article related to how histamine can be genetically influencing you, and you can click back and forth and see what your genetics can tell you about how you process histamine in your body (again if you look at just the standard 23 and me results you will not find this. You have to go to this extra step to find this. To no surprise I found out that Daniel's body has issues with processing histamine. I looked at my mom's and my husbands results and I found the exact same thing. What it is looks like is my children inherited from both sides of our family genes that make histamine a big issue for our family. So they got hit from both sides of our family genetically with histamine issues! My husband has had tinnitus the past few years and I had come across an article a while back about how histamine can be a huge influence on tinnitus (ringing in the ear or other sounds). My husbands tinnitus came out of now where and it is both ears. For some people they get tinnitus because of loud sound exposure but this was not my husbands case and so we had a mystery on our hands as to why. Well what I found out is that antihistamines (like Claritin or Zyrtec) they do not stop the histamine from being made they just block it. As a matter of fact what I read is the longer you are on those kind of antihistamines the more histamine your body makes it is just being blocked but it can cause tinnitus in some people. My husband has been on antihistamines since his 20s (he is now 53). So we took him off those over the counter drugs and he started taking vitamin c, quercetin (which is like a natural antihistamine) , zinc, nac and guess what his tinnitus has gone down significantly. It is not completely gone (I think it is because he still eats a high histamine diet and also there are foods/beverages that block the enzymes that break down histamines (like coffee and he drinks a lot of it). The other thing I want to mention and I cannot stress this enough is research hidden names of MSG! My son and i both REALLY react with our nervous systems to MSG and it is not just Chinese food. It is in so many products. Daniels tics would be way worse even with a little amount of MSG. MSG is a frustrating thing because it has to do with the molecules being excitatory. It is hidden under different names because what these food manufactures do is they take a food, like yeast or soy, and they cook it for a long period of time to enhance the flavor. In the midst of that long cooking process the molecules change to an exictatory state. . So when you see a product like "autolyzed yeast" or "hydrolyzed soy protein" they have an excitatory property in it for someone who has nervous system conditions. Wihen Daniel's tics were really bad (about 10 years ago) I did a ton of research on "hidden names of MSG" and we started avoiding those food (this also includes artificial sweeteners). I also found that foods with high fructose syrup and food dyes (especially red) affected him and me too. One time I ate a lot of Red Vines and my anxiety levels were off the charts. So I know I put a lot of information out there. There are doctors who specialize in histamine disorders (some call it Mass Cell Activation Disorder) (like the Mensah Medical I went to). The 23 and me health traits with doing the link between that other website I told you about might give you a lot of clues too but just do some research on histamine. I came across an scientific article last night when I typed in histamine and tourettes and it came up with this very complicated article about how histamine can be the driving force behind Tourettes. Again this many be an answer for everyone by any means but it is definitely something worth looking into. I really hope this can help someone out there in their quest to find answers. What is so interesting to me is the other day I prayed and asked God to show me what was going on with my daughter (her migraines have been so bad) and this histamine issue is what came back up after I prayed. That is when I started doing my research for her and it brought this thing full circle again). God is so amazing to me!
  24. Thanks Mama3 for replying my post. I cried almost every night the first week, I regained strength after reading the posts from this forum. I know I’m not alone in this long battle. {{Hugs}}
  25. Limemom, I’m glad to hear you have seen good results with the essential oils. We still use them for our son. As I mentioned before in a previous post, the tics always come & go with our son. I describe it as a revolving door. Some days he will be good with very few movements to none & other days they are much more prominent. He also has vocal tics some now, but they’re mild. We also started giving him a small dose of CBD oil a few months ago. His medicine did not seem like it was enough, but a whole tablet of Guanfacine was too much for him. The pharmacy recommended we give him a whole dropper each day, but we started out with a 1/4 dropper each morning after breakfast & we continue to ONLY give him 1/4 dropper once a day. We put it under his tongue & he holds it in his mouth for about 20 seconds, before he swallows it. It made his eyes red & a little irritated for the first few days, but it went away. We use Zilis Ultra Cell - Full Sprectrum HEMP CBD Oil. I buy ours locally at a pharmacy, but I have also found it on line. It’s a berry flavor & our son doesn’t mind the taste. In addition to the oils & diet, we also give him Guanfacine at night. We decided on medicine because his movements really started affecting his emotional well being & his daily life. We know that his transient tics are much worse without the Guanfacine medicine. We were against giving him any medicine in the beginning, but it really helps him. You may want to schedule an appointment with a neurologist, or try the CBD oil & see if it helps your son. I was very skeptical to try the CBD oil, but was glad we did. Please keep in mind what works for our son may not always work for everyone, but it helps to share our stories. I understand completely how you are feeling. Don’t allow the fear, anger & hopeless feelings to take over. Take it each day at a time. We refuse to let this control, or consume our son’s life. Hugs ❤️
  26. @worriedmom123 We only used the Synapsin for 1 month. My son said he would feel a “sudden jolt of happiness” immediately, but we were hoping for more help with his focus during school. I didn’t refill the prescription, because DS had a sinus infection and I didn’t want to use it then. We will probably try this again in the future.
  27. Thank you for posting this! My son who turned 6 last year suddenly developed tics. He blinked his eyes excessively. He said he is aware but he couldn’t help it. Poor boy has been told not to blink by teachers, friends and friend mommies, and felt very disturbed. Thanks to this blog I came across and I used the oil recommended here, lavender, vetiver, peace and calming, valor roller. And thank God I could see improvement within a few days, and I would say he almost got rid of it in 3 months time. However, when we thought the whole episode is almost over, the tic came back a little, and this time accompanied by throat clearing. I initially thought he has itchy throat, but after a while mother instinct told me something is not right. There the tic came back and accompanied by another one. I am very very worried. I have not changed his diet, as we do not usually eat much processed food. I think that the tics is the result of anxiety. May I know whether anyone of you has better result or oil combination? Thank you very much!
  28. Has anyone tried tinted lenses for their children when using a computer or any type of screen time? I wanted to know if the lenses help relieve some tics. Thanks.
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