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Showing most liked content since 04/25/2017 in all areas

  1. 2 likes
    Table and Text Excerpt from: “Treatment of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)” SE Swedo (NIMH), J Frankovich (Stanford), TK Murphy (Univ S Florida) In press, Journal of Child & Adolescent Psychopharmacology https://www.pandasppn.org/wp-content/uploads/2017/05/PANS-Clinical-Care-Standards-for-Use-of-IVIG.pdf
  2. 2 likes
    I want to make sure everyone gets this link to the Discover article "Hidden Invaders" on PANDAS. Someone posted about the article on this forum and now Discover has posted it online so it's easy to share. http://discovermagazine.com/2017/april-2017/hidden-invaders#.WQsk069P1mI.email
  3. 1 like
    An update, things seemed to have settled down. Two Activated Charcoal caps before bed seem to completely stop the nightmares and finally getting good sleep. Maybe just getting used to the abx or no longer flaring, not sure, but the 2 caps before bed can't hurt.
  4. 1 like
    Are you giving any ibuprofin? That may help calm things down a bit. Also may I recommend an excellent probiotic?We use Florastor Kids. My dd10 has PANDAS,Lyme, Bart. and Mycoplasma. She has taken a cocktail of antibiotics daily and the Florastor has protected her gut! As far as herxing reaction, I would make sure you have touched based with your Dr. Watch the foods your child is comsuming, food dyes and artificial ingredients for us have often led to behavioral changes and nightmares - specifically red dye for us.
  5. 1 like
    Hi We noticed an almost immediate improvement for the vocal tics when we started L-carnitine. However we were advised to not go above 500mg per day even though my son was adult weight & a young teen then
  6. 1 like
    I don't know how to distinguish between either flare getting worse, and "bad psychological effects" from zith, and herx. I feel a little more comfortable separating out allergic reactions to meds (because they are less like PANDAS/PANS flare symptoms) - and allergic reaction would be an important reason to stop the zith right away. My bias is that it might be herx, and therefore to wait it out, perhaps lower the dose if its too hard to take. For my own kid, I don't like to pile on other detoxing ideas for the first time, because you never know if he is having some reaction to those (I thought my kid got worse on charcoal when we first tried it, but can't be sure). Do let us know how it goes.
  7. 1 like
    I'm glad you have areas to focus on--tinkering. I know it can seem like a full-time job. Camp cabins are often also musty and moldy, just throwing that out--though they may have been new, or treated for mold and hence toxic in that way. It's great you have preventive measures--and that he can go to camp. Please let us know what you discover, Tracy.
  8. 1 like
    tj21 -- I know this must be so difficult. And first, let me apologize that I have not read your other posts where you may have discussed some of the additional efforts you have going on. Since you already have a functional medicine practitioner who is leading the way, and as Chemar mentioned, there are so many factors that could be involved, I'll just share a couple of thoughts that may or may not be a fit. It is possible with major immune issues to become hypersensitive to chemicals and allergens. I used to watch kids in the office of an environmental physician and saw a high pitched screeching tic triggered by formaldehyde exposure and a screaming tic triggered by mold exposure, etc. A food can also be behind it. Obviously you have a complex situation but do you think there are any environmental influences that may be playing a subtle role? For this, think in terms of an allergy to the nervous system--something doctors don't usually consider.
  9. 1 like
    Hi I replied to your post on the TS/tics forum
  10. 1 like
    Hi I am hesitant to comment when there is PANS involved as there are so many variables included then....but when my son had loud yelling tics, l-carnitine was very helpful. We also always found acupuncture, Epsom Salts baths & Bach's Rescue Remedy helpful when any tics ramped up
  11. 1 like
    Your story is heartbreaking - I am so sorry for all of the stress you are under. I assume that you are posting here because of a previous diagnosis or suspicion of PANDAS or PANS. Just in case you haven't seen the workup recommended at pandas physicians network, scroll down to section "III Workup" at this link: https://www.pandasppn.org/seeingyourfirstchild/ . This is not a really long list (like for example, Dr. T's), but a very basic one, and one that a doctor not expert in PANDAS/PANS could respect on account of the board of expert doctors behind this website. At any rate, beyond the basic checks for strep, there is a recommendation to check for heavy metals. That part is worded in a funny way - it's called poisoning, but it's also called a non-infectious trigger. At any rate, I know of a child that had excess mercury in her blood (and hair), and her PANS symptoms did actually improve greatly when they got the mercury level down. It really does seem to act like a trigger. I have heard aluminum as another that possible trigger that you could consider requesting to be checked. Have you ever chased yeast as a trigger? For your son, though zith is good, you might consider getting a different abx, as recommended (after 14 days if no improvement) on the second page of this link: https://www.pandasppn.org/wp-content/uploads/PANDAS_Flow_Chart.pdf .
  12. 1 like
    Thank you @boysrlove24. Yes I have actually. It is looking like he has some type of autoimmune encephalitis as well. We are waiting to get into UCSF MS/Neuroinflammation clinic. Fingers crossed he gets in. It's been a long road to find out what all is going on with him. Hoping he gets some relief soon!
  13. 1 like
    I'm a teacher. I've gone on class trips with different schools. I have never worked where the medication policy was anything other than the teacher administering medication to the child. We always had to watch the child take the medication, initial each time medication was given- this included vitamins. Your school must have a more relaxed policy. Personally, I wouldn't like it. Not all children make good choices, or are able to handle the responsibility. Let them be responsible for getting their homework assignments, asking the teacher for help, and working on relationships with peers. Medication? I don't really think that's something that should be taken so lightly by the principal.
  14. 1 like
    My first thought is, did you ask your DS why his medication was still in the pill box? What did he say? I don't know what the principal means by "appropriate times," but I would wonder if your DS didn't want to take the pills on a regular basis in front of his friends/classmates; if, like my kid, he wanted to be "normal" and "like everybody else" for those 6 days, maybe? It's hard to know what the group dynamics were, what the housing/rooming situation was, etc., but I guess I could understand that, at this age, the chaperones didn't feel as though it was appropriate for them to hover over your DS to ensure he took his medication. You trusted him with the pill box, rather than a chaperone, so perhaps they took that as an indication that you more or less trusted him to take his medication as appropriate, and they took a similar path? I would talk with your DS about it and perhaps brainstorm some strategies for the next trip, either so that he doesn't forget (whether or not there's an adult present to remind him), or so that he feels like he can take whatever he needs to take without "making a spectacle" of himself. When my DS was a little older (9th grade) and out of town on a school robotics competition trip, we talked about how he would take his meds first thing in the morning, with a glass of water from the hotel room tap, before he even left the room for breakfast or whatever was on the schedule. That way, he had at least a little privacy and didn't have to haul the meds around with him, or run the risk of forgetting. Another idea might be to set up reminders on his phone so that he gets beeped or whatever to remind him, if he's the forgetful type. Otherwise, for the next trip, you might request a one-on-one conversation with the head chaperone and ask, specifically, that they find a moment to pull your DS aside, outside the hearing and/or eyes of his peers, and ensure that he's on schedule with whatever he's supposed to be taking.
  15. 1 like
  16. 1 like
    Months ago I shared that food allergy treatment was our final piece to the puzzle in getting rid of symptoms that seemed to have no explanation. It seems to have held as well. Last October though, my perfectly healthy 100% free Pandas child of many months flared from a tetanus immunization shot. A flare could not have been further from my mind, and I did not even recognize it right away. We started ABX (an increase from his prophylactic dose) without any great results. I started advil 2x a day and that did the trick. For the most part he has been back to 100% again with very minimal wax/waning. He came down with a cold 5 days ago and sure enough....there were the symptoms...I was smart enough to start the advil 2x a day and this approach seems to have nipped it in the bud and also prevented further escalation of symptoms. I still believe that the October flare still has a little hold on him. An off day/half day here and there. Thinking that those dam antibodies will just need some time to completely leave his brain....Otherwise he is in good shape and holding.
  17. 1 like
    Hi Newbie, I have a couple thoughts on getting the compliance/participation. It seems that often our kiddos' "fight or flight" reaction is hypersensitive-hyperactive and beyond their physiological control, so anything that might trigger it is going to get you into the battle zone rapidly and unwittingly. So, preparing ahead by thinking about how to keep kiddo soothed will help. So, if you've had to resort to calling the police, your going to have to prepare in the future on how you can make the experience 5x more fun/positive than however "bad" it seems to him. So, while in a normal situation being over the top accommodating would be looked at as encouraging bad behavior, here you are dealing with a brain on fire that doesn't work normally and can't be expected to handle even minor stress well. With our kiddo, when we started this mess, I took him to buy a small lego set after getting his blood drawn. He's Lego crazy, so this helped. Little did I know how many blood draws were to follow!!! But we have kept up this tradition and he earned larger Lego sets (or playmobile) when he had other procedures like IViG, MRI, EEG, etc, etc. Often he will pick out the gift ahead of time so that you can use the anticipation of something good happening immediately after he does what you want him to do. I hate to think how much we have spent on Lego, but it has REALLY helped him cope and find an "upside" to the whole mess. One other thought, these kids often secretly blame themselves for being ill/behaving badly and it's very important for their psyche to externalize the illness. So, you might want to share that you know it was the PANS itself doing a number on his brain that made it so hard to get into the car to go to the doctor, but that you understad that it was not "him" misbehaving. So, you are going to devise a plan to help fight the PANS/Bad antibodies/or whatever you call "it." You can get his input or surprise him. For example, I'm imagining a colorful gift bag with balloons attached and perhaps some small (dollar store?) gifts and kiddo gets to open the first one when he is buckled in the car. I'm sure you'll know what your kid is likely to respond to positively. Lastly, giving kids lots of opportunities to feel "in control" in this crazy situation if helpful to them and the situation. So, choices like, "Do you want to wear or not wear your coat in the car?" Would you like the radio on or off? Do you want to take the ipad or not? They need empowering in this difficult situation...Hugs, hope something in this helps...
  18. 1 like
    The brownies were a great success, so here's the recipe I used (modified a bit from the original). They're quite easy. It's not completely sugar free the way I did it, but pretty low in sugar; the original recipe uses stevia and sugar-free chocolate chips, in which case it is sugar free. 1 American cup is 240 ml, half an American pint or slightly under half a British pint, by the way. Makes 12. Prep time 10 minutes, cooking time 20 minutes. 1 smallish banana 4 tbsp milk 4 tbsp / 100 g butter or coconut oil, melted 1 egg (can omit this or use a substitute if allergic, according to original recipe) ---- 125 g / 1 American cup plain flour ("pastry flour") (can use gluten free; if so add 1/2 tsp xanthan gum) 65 g / 1/2 American cup cocoa powder 1/2 tsp baking powder 1/2 tsp salt 1 tbsp brown sugar: that's what I used and it was plenty. The original recipe says 1 1/2 tsp pure stevia extract or 4-6 tsp Sweetleaf powdered stevia, but according to Sweetleaf's website that's supposed to be equivalent to 10 tbsp sugar, so I think the original recipe has overdone it! ---- 1/2 cupful chocolate chips (optional) 1/2 cupful chopped walnuts (optional) 1. Preheat oven to Gas Mark 4/350 F/180 C. I put the butter in there to melt. 2. Push the banana through a sieve. If you just mash it the mixture comes out lumpy. 3. Add the milk, butter and egg and whisk together. 4. Add the flour, cocoa, baking powder, salt and sugar and mix well. 5. Stir in chocolate chips and nuts if using - keep some chocolate chips back to put on top. 6. Line an 8" x 8" baking dish with parchment paper. Pour batter into dish and top with a few more chocolate chips. 7. Bake for 20 minutes. 8. Allow to cool for 10 minutes before slicing.
  19. 1 like
    Another recipe thread. What are your favourite sugar-free recipes you've discovered over the years, the ones you use all the time? Or any other handy ways of doing things you've discovered, that aren't actually recipes? We can pass them all on here. The person who posts the best recipe... er, is a clever cook. :-) Also, you could post your requests for things you haven't found a good recipe for yet, and see if anyone can step forward with one. That's all the special diets I can think of; if anyone else thinks of one that ought to have its own thread, please start one.
  20. 1 like
    We always halve amounts of sugar too. Once you're used to eating less sugary things, the amount of sugar in ordinary recipes just tastes far TOO sweet! I wonder if those jars of baby food apple puree would work instead of apple sauce in recipes? I'll let you know if the brownies work with mashed banana!
  21. 1 like
    I'll start: Baked banana pudding This isn't the same pudding that's sometimes called "baked bananas" - it's somewhere between that and bread and butter pudding. A hot pudding made in ten minutes, and it's good for you. These instructions look more complicated written down than they are to do. It has to be said that the result looks like something scraped out of the bin. This is normal, and it doesn't taste like it at all! (It looks more appetising once it's got yoghurt and jam on top.) Ingredients Quantities depend on the size of your ovenproof dish, these are for ours which is about 7 inches and makes enough for 3 people. 2 or 3 slices of wholemeal bread 1 or 2 bananas - should be thoroughly ripe, in fact this is a good use for slightly overripe bananas, though preferably not actually going mushy. 1 teaspoonful of mixed spice 1 dessertspoonful of raisins Milk Plain yoghurt and sugar-free jam for topping. Cut bread into fingers - cut each slice in half and each half in thirds. Line an oven-proof bowl with the pieces. Sprinkle with spice and raisins. Cut bananas into halves or thirds (depending on size), then halve each piece lengthways. Lay them flat on top of the bread. Pour on some milk - half or quarter of a pint, maybe, not sure. Bake in a medium oven for maybe 20 or 30 minutes, check from time to time to see that any sticking-up edges of the bread aren't burning too much, until it looks done. Serve with milk (the first lot of milk will all have evaporated or been absorbed by now) and yoghurt and a spoonful of jam on top. Note on sugar-free jam It's worth seeking out the kind sweetened only with fruit juice, e.g. Whole Earth or Meridian, which is labelled "Pure fruit spread" because it can't technically be sold as "jam" (at least not in this country). You probably still shouldn't go too overboard with it, as it has a fair bit of concentrated fruit sugar, but I assume it's not as bad as ordinary jam and it's worth getting just for the taste. Since they can't bulk it out with sugar, it's impossible to skimp on the fruit, so that it tastes more fruity than any ordinary jam I've ever had. I don't know why more people don't know about this!