PANDAS? Hoping for answers
Outofthefryingpan replied to ThreeAngels's topic in PANS / PANDAS (Lyme included)Hello There Three Angels, Welcome! I know that it can sometimes take a long time to get a response on here - since the relative privacy that this forum offers means that it is not as immediate as social media and peopIe tend to check into it less often. I have a young teen with relatively new tics and ocd, so we suspect PANDAS. I can certainly agree that tiredness, caffeine, stress and going too many hours without food/water all seem to make it worse. We also find that gluten and dairy have a detrimental effect (this is not the same for everyone) and indeed all the usual "nasties" that come with processed food. We have based our thoughts on experience, trial and error and dietary tests. 4Nikki makes an excellent point that it is important to stay on top of looking after immune health since inflammation (either caused by certain foods or infections) doesn't help and manifests itself as different symptoms in different people.
Tic Attacks in Car
Outofthefryingpan replied to kmilligan06's topic in Tourette Syndrome and TicsHi kmilligan06, I am so sorry to hear of this development. I know it can be so worring and distracting for both of you when it happens when you are driving your daughter. My son tics in the car but in his case I think it is more due to fatigue and release. (He also has to deal with trying to ignore intrusive thoughts). I have often wondered to what extent fuel, PM and off-gassing from car components contribute to the overall inflammation in the body. To remove these completely for us would mean a house move and a dramatic lifestyle change. It is also possible that the car may be a red herring and it might be something that is occuring before her journey that is impacting her (including stress). Is it in both directions that it occurs (to and from home) that it occurs? Is the car new from the factory?
Sudden Onset of Severe Complex Motor/Vocal Tics
Outofthefryingpan replied to NurseMom21's topic in Tourette Syndrome and TicsHello Everyone! NurseMom21, Mommymom, Momxiety, WorriedMum, Sheila, LLYNCH & Chemar. Thank you all for sharing your experiences here. Your posts help us to brainstorm here in our family and we are so sorry that there are so many children and parents struggling out there with these awful symptoms. I hope that some of you will have had better days since you posted or have found some things that are useful to get some relief. I just saw that I posted 20 days ago. Re-reading that, it's difficult to see how things could have got much worse than that but we have just been through over the last five days and our nerves were left in tatters. My real reason for posting is to share what we discovered. My child is not better but the pressure cooker intensity in our household has diminished from an 11/10 to a 6. SUGAR, WHEAT AND MILK. SUGAR - We decided to keep a daily diary of everything. Weather, food, hours of sleep, hydration, stools, behaviour mood. We logged all meals and snacks on one page and on the opposite page noted any changes in behaviour. On one day we were totally baffled. I had home-cooked everything organic, from scratch. There had been no arguments in the house, no wheat, sugar or milk consumed and no screen time. That evening, my son had the most terrifying rage. Screaming himself hoarse, crying for help, hyperventilating, panicking, wide-eyed, breath-holding, red in the face, muscles tensed. It lasted in waves for an hour. We would have almost have called emergency services except for the fact that in our heart of hearts we knew that they would only administer medication or some form of sedation to mask the problem. Once my child had recovered...and he did. He admitted that he had found some long-forgotten-about secreted toffees and gummy bears [milk, possibly wheat, colourings, preservatives, & SUGAR] and couldn't help himself. Impulse control is not his forte! There were episodes like this for five days. We're still alive...just our nerves are in tatters. WHEAT - I looked back through the diary comparing foods and 'episodes' and looked for likely culprits. My child and his dad are gluten-free. One was after eating some black pudding (sorry vegetarians!). He ate it because his dad ate it, and dad had changed the brand. On the label WHEAT. In the bin. MILK - We had not flagged milk as a problem. We had switched to A2 Guernsey milk. One night, I watched my son down a mug of warm milk before bedtime. The result? After half an hour the same uncontrollable fit, rage, panick, screaming. Some have mentioned on here that these are not a trigger. Every child is different. My son never had any reaction to any of these until Christmas time this year. I suppose my nugget of wisdom here (Thank you Sheila, for your book) is that a diary helps. It is laborious and tedious and make sure the person with the neatest handwriting fills it in so that you can read it back! But it does help. Tics we are left with are ramming fingers up nose, screwing up eyes and banging his head with his fist and repeating things very fast over and over like a tongue-twister (homeopath Zoom later) but compared to the sheer torture of the [discovered] food triggers, it is manageable. Much love to you all xxx
Sudden Onset of Severe Complex Motor/Vocal Tics
Outofthefryingpan replied to NurseMom21's topic in Tourette Syndrome and TicsWe have had exactly the same issue with our son, age 13. Around two weeks ago, some mild OCD type behaviours suddenly exploded into violent motor and vocal tics. He shakes and jumps and tenses himself up and screams at the top of his voice. We're pretty sure the neighbours must think we're maltreating him! His motor and vocal tics have been at their worst on waking in the morning and going to sleep at night, with three or four severe episodes over the space of half an hour each time. These have worried and upset him and us a lot. They were so bad he would practically go from lying to standing in one jolt and it was hard to hold him in case he hurt himself. It has been a very harrowing and fractious time. We already see a Functional Medicine Practitioner and had started to do some investigation related to the OCD type behaviour. Vitamin and mineral levels - this was an update/check as he already takes supplements Lots of exercise - seems to lessen the frequency Pyroluria test (his dad has it) - this was positive a food intolerance test - We eliminated gluten and offending foodstuffs and changed to A2 dairy We took away his electronic devices for a week - that was a tough one! We are having some old windows replaced - so thought to look into mold sensitivity We use essential oils and are looking for a weighted blanket Epsom salt baths - Relax him but don't eliminate the tics There are lots of other avenues that we haven't yet tackled, so there's a long way to go. There's also the PANDAS / Strep idea. We do a lot to nourish the gut and immune system already - so it's like a kick in the teeth that this has come about all of a sudden! We are working our way through Sheila's book. So glad to have found this site/forum!