Wombat140 got a reaction from PANS-mom in Adult with PANS
27?! That makes me with my onset at 13 feel quite mainstream. I've been told occasionally that it can't be PANS at that age. Well, somuch for that, evidently.
I think there is supposed to be a reason for it in that it's supposed to be a thing that happens when the immune system isn't fully developed yet, but perhaps yo u and I just have something odd about our immune systems. I mean, genetics can get you in all kinds of ways, so maybe we have some kind of as-yet-undiscovered genetic problem with our immune system that meant that whatever it was that's supposed to have happened by then that makes you no longer susceptible to PANS reactions, hadn't. Just speculation.
(It's also, I think, true that neurological Lyme disease is mostly not even about immune reacions but to do with the bacteris directly nib bling at neuron insulation, so presumably thed developed-immune-system thing wouldn't apply.)
(I am literally like a house with mice chewing the wiring. :-) )
Wombat140 got a reaction from million1 in Favourite sugar-free recipes
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.
Wombat140 got a reaction from million1 in Favourite sugar-free recipes
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!
Wombat140 got a reaction from million1 in Favourite sugar-free recipes
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.)
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
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!
Wombat140 got a reaction from million1 in Favourite sugar-free recipes
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.
Wombat140 got a reaction from MomWithOCDSon in New Oxford study finds some psychosis cases are immune-related
Interesting. Not PANS, but might get them interested? Antibodies to NMDA receptors, that's the same thing that was involved in the "Brain on Fire" case, isn't it?
Wombat140 got a reaction from wisdom_seeker in Anyone know current status of Amy Smith from California?
I didn't know you were a member! Ouch, that really does sound like a mess, sorry to hear about that. I hope you've been able to get things somewhat back to normal now at last. Wanted to say thanks for being so thorough and attentive once we did get the appointment arranged. It's such a lovely change to be working with someone who really talks to you, like anyone would innocently expect. We've been knocking our heads against a long line of practitioners who don't definitely acknowledge that you even said anything, or else come back with an answer to a completely different question, or something poker-faced that you can't attach any meaning to at all - it seems an astonishing luxury to be able to hold such a sane, human conversation with Amy and her staff!
haha EXACTLY, perfectly sums up the kind of chaos you're up against with PANS! and that's why it's so great to be able to work with a nice, helpful person who says "OK, how can we arrange something", rather than making bleeping noises and repeating their previous statement!
Wombat140 got a reaction from GMT111 in Who treats adult PANS and will consult long-distance?
We're at our wits' end to find anyone who can treat me - we'd had high hopes of Amy Smith in California but have been unable to get any reply to our calls and e-mails so far.
Who do all of you know who will treat PANS in adults? And who's willing to do long-distance consultations? Please name as many of each as you can!!
My family doctor is willing to take any blood samples that are needed, write prescriptions on the specialist's instructions (so long as they're not for things that she, at her level of seniority, isn't authorised to prescribe - I don't know how likely that is to be a problem) and be responsible for keeping an eye on my general physical state. I know that that's the eminently sensible-sounding arrangement Amy Smith follows for long-distance patients, but no sooner had we established that than she went incommunicado on us.
By the way, if we can find such a person, do you happen to know if there are any particular difficulties to be dealt with in being treated by a doctor in another country? We're in the UK and I know there don't yet seem to be many PANS specialists outside the USA.
Thank you all very much in advance,
Wombat140 got a reaction from ibcdbwc in I want to know the "why's".....
Hmm, I recognise everything in that description, in fact I've had that feeling for the last few days (alongside a nasty bout of worse-than-usual OCD) and it's only now let up a bit. I've been making vague attempts to try and describe it in words to pass on to doctors but couldn't manage it, but you (and your son) have described it exactly. I'm going to bookmark this for future reference. And it DID feel exactly as if my head was jammed full of something. Which, if theory is correct, it was.
(Did he keep letting his mouth hang open and opening his eyes wide or was that just me? I kept catching myself doing that, apparently in some foolish attempt to relieve the pressure.)
Wombat140 reacted to Sheila in A note about Facebook pages
I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.
A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.
Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.
What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.
We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.
Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.
We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.
Wombat140 got a reaction from dut in Red speckled rash, please can anyone identify?
There's this rash I get from time to time; it started years ago, and was quite noticeable for maybe a year or two, and then it seemed to sort of fade out, but I still notice tiny bits of it every now and again. It's only just occurred to me to ask about it on here.
It appears as small circles of dark red speckles, about an inch or two across, nearly always on my arms or legs; I can't remember whether they were rings or solid circles, though I rather think they were rings. Not raised or bumpy at all, just speckled. I can't remember whether it was itchy or not when it was at its height.
That's what it was like at the time when it was most noticeable, now when it appears it's only much smaller patches of no particular shape. I would attach a photo, but unfortunately the patch I noticed the other day has gone again!
My mum tried putting tea tree oil on it, which seemed to work to some extent but it kept coming back, so she took me to the doctor about it and the doctor said it might be ringworm and gave me some cream called Daktacort, which didn't have any effect at all. (After that we kind of forgot about it.) Having seen photos of actual ringworm since then, I don't think it was, ringworm is far more lumpy. I honestly can't remember whether this was before my OCD symptoms started, after, or at the same time; if it turned out to be relevant, I could probably find out by asking my doctor to look up when that cream was prescribed.
Do you happen to know anything that causes a rash like that?
I'm just asking on here because you seem to know just about every infection there is, between you! There's a possibility of getting my blood tested for infections (this Wednesday, February 3rd), and I thought if there is any infection of that nature that looks like this, it would be as well to know so I can make sure to ask them to check that one. Of course, it may be some perfectly ordinary non-PANS-related fungal infection or something that my doctor didn't happen to know of, in which case it'd still be useful to know.
All the best,
Wombat140 got a reaction from WorriedMom55 in Questioning TS
I don't know what type of magnesium is in Natural Calm, but there is a rule of thumb that for most people, calcium citrate and (I think) ascorbate tend to cause diarrhoea, calcium carbonate the opposite, and I think it's the same for magnesium. Magnesium oxide also tends to cause diarrhoea. Although cheap and the most common kind, magnesium oxide's not much good anyway as it's only about half as well absorbed as other forms; one webpage I found from a quick Web search just now, http://www.kumc.edu/school-of-medicine/integrative-medicine/the-benefits-of-magnesium.html , implies that that's actually the reason it's bad for causing diarrhoea. The same page suggests glycinate or aspartate are among the ones less liable to cause diarrhoea.
It also recommends applying it to the skin as another way around it, as you already know - either as a cream or by soaking the feet in Epsom salt solution (as silly as that sounds it's a well-known thing on here and appears to work quite efficiently!)
According to other sites, an excess of magnesium, in any form, can cause diarrhoea anyway, so that may be the other explanation, simply too much at a time.
Good luck and I hope your son soon starts to recover; well done with all this detective work!
Wombat140 got a reaction from dut in Anyone here got worse after taking vitamin D?
Dut posted while I was replying - thanks Dut, useful to know that. And I know what you mean about it being so up and down naturally that it's hard to be sure what anything is doing, mine's like that too! (hence why I was remarking on my mum and I both agreeing that it had got worse - not always the case!)
Wombat140 got a reaction from MomWithOCDSon in Safe dosage of inositol for 12 year old boy with OCD?
I've read the papers on it myself when I was trying it, and I can only say that in the studies that have been doneon adults, there were no serious side effects even at 18 grams, so that suggests it's a pretty innocuous substance. (Couple of upset stomachs was the sum total of the adverse reactions, and everything upsets somebody's stomach - I'd be suspicious of any clinical trial that didn't report any upset stomachs!)
So that suggests that, for instance, 12 grams would be safe enough even in someone smaller than that. And that, or less, is apparently quite enough for many patients. As Nancy said, start small and work up gradually (that's what you're supposed to do with inositol in any case) and take his weight as a guide to how his dose ought (maybe) to relate to an adult dose.
There's a page here (by Fred Penzel, one of the well-known OCD experts) that has information about his experience with inositol in his practice and a very handy guide to how fast to increase the dose: http://www.wsps.info/index.php?option=com_content&view=article&id=70:inositol-and-ocd&catid=36:ocd-and-related-subjects-by-frederick-penzel-phd&Itemid=64
Wombat140 got a reaction from mama2alex in Tips for getting a resistant teen to go gluten-free?
If the problem's that he sticks to the diet at home but not when he goes out with friends, maybe make sure there's always something good available that he can grab straight away and take with him. (Apologies if you already do.) The incredible scones (I think you call scones biscuits in America?) from Marilyn LeBreton's recipe book would be one handy option for that - I say incredible because they're exactly like normal scones (good ones!), but they keep for a week. We ate rather a lot of those when I was trying the GF/CF diet.
As for books, Luke Jackson's "A User Guide to the GC/CF Diet" (Jessica Kingsley Publishing, www.jkp.com ). It explains the basic principles of the diet in plain language, and it's also a complete hoot. (It was written by a 12-year-old with Asperger's and a weird sense of humour.) It's based on the original theory, that the diet works because of peptides from gluten and casein, so it contradicts the articles Rowingmom mentioned, but so it goes. It also has some good recipes in the back.
Wombat140 got a reaction from MomWithOCDSon in Chronic Functional Abdominal Pain (CFAP)
May not be a complete/long term solution if it works at all, but it's always worth trying a peppermint oil capsule. We keep some in the cupboard and I take one any time I have a belly ache or feel a bit sick for some reason, they work like magic for me.
Of course, it sounds like your friend's daughter's problem is on a rather different scale from ordinary random stomach-aches, but still it's worth a try, if it might be able to give her a bit of relief while they're waiting for answers.
You can also get slow release ones to be taken every day, which one study found to be a pretty effective treatment for IBS, better than the current standard medical things - so they really do seem to be quite powerful stuff.
Wombat140 got a reaction from Bella in considering CBT again but......
Remember also that a CBT therapist wouldn't necessarily be a trained doctor in any case (I don't know whether yours was), and so might not be expected to know about clearly "physical conditions" like PANS, it'd be considered "not their area", any more than arthritis is a dentist's area. At least that's how it is over here - it tends to be very much separated between people who deal with "psychological issues" and people who deal with "physical issues"; if I was seeing a psychological therapist and came to them saying "I've come across this thing called PANS, do you think that might be involved here?", I'd expect the answer to be along the lines of "ooh I don't know, it might be I suppose, you'll have to speak to your doctor".
Bad system in some ways, since it means that once your doctor's passed you on to a psychological therapist you have nobody to consider any possible physical issues that might be contributing to those same symptoms (and vice versa, an immunologist won't be able to speak for any psychological factors), but you can see how it happens.
Good luck to you and your son with the CBT!
Wombat140 got a reaction from MomWithOCDSon in please positive vibes
Thanks for that remark about "coping skills", Smartyjones, that's made me feel better about myself too - I sometimes think I've got no self-discipline at all, at the moment there are loads of things I'd like to try and do and I don't want to moan, but I mostly end up collapsed in front of computer games and I do moan. But I think actually maybe I've got pretty good "coping skills", I just have a lot to cope with at the moment!
I hope it all went well.
Wombat140 got a reaction from mmiglio in Luvox?
Hello, did you see the SSRI thread I started recently? Somebody gave me some detailed instructions about what constitutes a "low dose" and slow enough increase for a patient with PANDAS. Worth taking a look at. I did some looking up and confirmed that they fall into two groups - ones that conventionally start at 20 mg (fluoxetine/Prozac, paroxetine/Paxil, citalopram) and ones that normally start at 50 mg (sertraline/Zoloft, fluvoxamine/Luvox). For the 20 mg ones, if it's PANDAS and you're playing it really safe you start at 2 mg and for the 50 mg ones like Luvox, 12.5 mg (again that's the really careful dose, some PANDAS kids get away with starting at 25 mg without side effects, but some find it too much.)
Wombat140 got a reaction from searching_for_help in Could this be H. pylori, and has anyone found treating it helped?
Fascinating article - thanks. I never knew that B12 deficiency and mental symptoms was actually a recognised thing.
We've decided that since I'm definitely losing weight, in spite of my best efforts to eat as much as I can, this is something the doctor will take seriously, so appointment booked for next week. I'll raise the question of H. pylori - it's lucky that for once it's something that doesn't require a blood test!
Thanks for the warning about the breath test. I haven't been on any antibiotics for quite a while anyway (and I can't stand aspartame, don't know how anyone can like it).
I'll let you know how it goes.
Wombat140 got a reaction from MomWithOCDSon in Interesting perspective from Beth Maloney
Would just like to be a bit cross about apparently irrelevant appearance of Asperger's syndrome in the above sentence. Asperger's has nothing to do with either violence or sociopathy that I ever heard (and trust me, I remember what I read, I'm an Aspie :-) ).
Fair point though, apart from that - we don't really know. Apart from anything else, the strain of living with the other symptoms of PANDAS might well be enough to drive anyone crazy... that's something they say about Asperger's too; people with Asperger's have a higher rate of most mental illnesses, but nobody's sure whether that's just because they have harder lives than most people.