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Hi my kids love HLC probiotic by pharmax. We use high potency and it seems good and tastes great. we hide other powder type supplements underneath. You can also use florastor and break open the capsules. Pharmax has a sweet sort of peachy taste and the florastor tastes a little cheesy.

Hi - have you explored other infections such as lyme, bartonella etc. I'm no expert wrt other triggers but the pain would make me think that maybe triggers other than strep might be at play. I would also post on the Lyme forum (where some PANDAS folk end up) for their opinions too. Good luck...

Hi - the addition of a third set of criteria, in addition to PANDAS and PITANDS, to allow for epidemiological studies, makes sense. My fear, however, is how many doctors will see this as an addition to rather than replacement of the other two sets? Even us fairly aware, deep forum mining parents have been eager to adopt (me included) the new name of PANS hoping it was the great leap forward. There needs to be a decent playing ground without controversy on which to further the research but I worry that drs and others will take these new criteria as the only ones and that, yet again, many children will fall through the cracks.

Hi - have you tried ibuprofen as a stop gap? It appears to work wonders for some kids, including mine. We used it most recently for ticcing in our dd who says she can feel it start to work 1 hour or so in and last about 5-6 hours. It could maybe help take the edge off. It has also done wonders for ds with behavioural problems such as raging and opposition from PANDAS.... good luck....

I'd swab it....

hi - yeh, sensory has been a huge issue at times for both my PANDAS kids. Sensory seeking son like nicklemama's child and a sensory defensive daughter. She refused to wear anythingbut 2 pairs of trousers and a couple of tops at one point. There was only 1 pair of sandals that she would wear, no socks, no hairbrushing etc Treating the PANDAS, treats the sensory stuff for us......

Hi - my dd had something that may be similar... during an episode about a couple of years ago, when she went to bed she said that it looked as though I (lying on the bed with her) was miles away and she would look round the room and everything felt as though it was too far away. It would correct itself for a bit and then I and other things would be too far away again. It only happened at bedtime (which is a low point for her when things crop up that might not be evident at other times of the day). It went away after a couple of months. Both I and my sister get something which I believe to be similar but maybe not.... we get kinda proprioceptive changes of a sort. When we're tired sometimes, normally laying in bed at night, we feel as though one of our digits or sometimes a leg has grown to super enormous size. Not a bad but strange feeling, as though a thumb, say, has suddenly ballooned to 20 times it usual size. My dd's sight thingy felt as though it was along the same lines, a perception type issue rather than actual shifting in vision.... dunno... hope you work it out, good luck...

Hi - I wonder if because the rash responded to the benedryl or in that time frame, if it is an allergic reaction. We've not had much experience with herx reactions but would a herx rash disappear within an hour or so? I know that you can get what is called the amoxy rash with amoxicillin and have been told by a couple of drs that is when there are a couple of infections present (one usually being EBV, I think) and the body gets confused and produces a rash. That might also be possible with macrolides like zith, dunno. I would just be extra cautious when giving more doses and watch closely for any other reaction. I certainly would not give a dose near bedtime when I was unable to keep an eye out for any reaction to the med. I'd just be super vigilant if you decide to keep using the zith. How long has she been using the zith? Don't want to be the voice of doom but we have 1 child with the anaphalaxis type allergy and 1 that had a really severe delayed serum sickness-like reaction and I am now wary of rashes. If you are concerned but want to keep using the zith, you can always get tested and that will at least rule out the immediate type reactions. Hope you work it out.. good luck...

Hi - just thought it worth a mention but sensory processing issues can look a lot like adhd and for us sensory comes hand in hand with PANDAS with many, if not all, flares. Also, my dd is a classic onset/presentation type child. My ds is not. If it weren't for his sister's dx, it is unlikely he would ever have gotten dxd and, I suspect, he would have been labelled ADHD and/or ODD but he absolutely tanks with illness and all signs of ADHD and ODD type behaviours disappear when he's at baseline. I'm not saying that the PANDAS is the cause of the ADHD behaviours that you're seeing but I'd be super suspect. I have also noticed with my kids that we can have layers of behaviour. When one layer goes, you can still be left with another behaviour which, to some eyes, might shout 'co-morbid'. However, I know that when at baseline ALL the symptoms go and that, for my kids, what could appear to be one disorder with some co-morbid other(s), is in fact, just infection triggered neuropsych changes.

EAmom - rather than being high (or low) histamine you both may have, instead, abberant mast cells that degranulate at the wrong time.....

Hi - we have been recommended a probiotic called HLC by pharmax. They do a high potency powder that has acidophilus and bifidus, 2 types of each plus some frucooligosaccharide for the bugs to eat. the powder tastes great and we put virtually all supplements under it to hide them from the kids Both our savvy ped and great pharmacist rate it very highly. it's the only probiotic our pharmacist sells. he says its the only one he really trusts. The blurb on the site says it's a human versus animal strain so does better surviving in the gut and embeds much better. It is expensive coming in at $56 for a bottle of 120g where 1g delivers 10 billion. I've found that it's the only probiotic that I've taken that makes (tmi alert) me really gassy and actually feels as though something is happening in there. I've taken that to mean it's working We combine that with Florastor and kefir of various sorts for variety of bugs.

Hi - I agree with jag10 with regards the younger kids. my dd8 was very classic presentation at 4 years old. There was no missing her sudden onset(overnight) of the whole remit of PANDAS symptoms. My ds 4 who was 7 months at the time is way more subtle. If it hadn't been for his sister he would probably never have been diagnosed. We believe, with hindsight, that he probably had his first exacerbation as young as 7 months old at the same time his sister had her first recognised episode. Again, though, with hindsight, we believe dd probably had her first unregcognised episodes sometime around 2 years old. With my dd I can see a PANDAS symptom a mile off. Even when super minimal (and they can be), like a dot of black ink on a white sheet. For my ds it is much harder because I don't think we have ever really had a decent amount of time to see him at baseline. I think I know what is normal for my ds but second guess myself on what is PANDAS and what is him. I beliive my ds is the kind of kid that would normally not get dxd and would fall through the cracks as a difficult or troubled child.

Hi - we're from the UK originally, now in US. I don't know if this info is current or of any use but we were given this guy's name as somewhere to go in the UK if we were ever to move back. He's at Bart's in London. http://www.bartsandthelondon.nhs.uk/our-services/centre-for-neurosciences/meet-the-team/consultant-neurologists/show/professor-gavin-giovannoni/ He also has a blog and facebook, I believe. Doubt he's treating but maybe could direct you to other PANDAS savvy drs. Good luck...

yeh, Dr AJ really is piece of work. I'd happily help you drag him out back.... don't worry, the karma police will get him.

Hi - just our recent experience with both ds4 and me but for us it took 2-3 days for die off type symptoms to show. We were both ok day 1 and 2 but really tanked on day 3. If I were doing it with my school age dd, I'd be tempted to start thursday night, hope friday wasn't too bad and have the weekend for the really yucky feeling days. My ds4 PANDAS has flared throughout most of our 14 day course, mind you, but he felt the worse days 3-5 I think. Yesterday, day 13 he actaully seemed to start coming round behaviour-wise which I'm hoping means his die off has died off:) We didn't add anything else except lots of probiotics and are now adding in s.boulardii. He did develop what looked like a patch of eczema on his face but that could be coincidental although not normal for him. Good luck, hope it works. I think yeast is b***h. My mom has had issues for years and she finally did a month long course of diflucan, backfilled with good quality probiotics and s.boulardii AND did a yeast diet eg no sugar/no carbs for a whole month. 2 weeks later the yeast came roaring back. I think for some folks it may be a kind of specific immune def. dunno. My ds is just a yeasty kid. We'll get him swabbed again (throat) in a couple of weeks. See if it's gone from there, at least.....

Hi - our ds4 had 3 weeks of stuttering that was stopped dead with zithromax. It didn't appear to be OCD related or brain fog but a real stammer where he'd get stuck on the hard consonants at the beginning of words. Although, I know it's not on Swedo's list, according to Dr T it is seen fairly often in PANDAS patients, and he's seen a fair few in his time. It appears that stuttering (and from what I believe this is a commonly touted theory in the stuttering world too) can be caused by too much dopamine which would make it something that you wouldn't be surprised to see in a PANDAS child due to the dpoamine dysregulation. I'm not saying it's PANDAS mind you, just feel that stuttering can be part of the wide constellation of symptoms that can be seen with these infection triggered kids.

Hi again - my ds4 wakes up multiple times a night, no fears but terrible sleeper. my dd8 has to come into bed halfway thru the night with me and ds 4. During bad exacerbations dd8 has had night terrors, multiple wakings, fears, bedtime rituals etc. good luck

Hi - our ds is also 4 and his PANDAS symptoms include a lot of aggression. His impulse control can be virtually zero when he's flaring. He punches, bites, spits, scratches. He's sort of like a runaway horse, rampaging crazy round the house hitting etc when it gets really bad. Sometimes you can shock him out of it. This isn't his normal self when well. All 4 year olds can have their moments but for our ds it's like normal 4 year old stuff x 50. For us it doesn't appear to be OCD related ie getting angry when you interrupt him on a ritual or when he's getting stuck on something. It more seems like he loses impulse control and is just angrier and meaner.

Hi - I'm not saying it's not HSP but just for info our experience with dd..... Our dd was on augmentin and had what appeared to be a normal type allergic reaction hives swelling etc but she was also getting very hot swollen joints. her knees and elbows were bright red, hot and swollen. The hives were coalescing and becoming bruising (vasculitis) and she started to get awful joint pain. Her major joints were the ones affected - knees, elbows, ankles and wrists. She would be screaming in pain and unable to walk without full dosing benedryl, double dosing zyrtec and ibuprofen. She was having a serum sickness like reaction to the penicllin. It started on day 8 of the course and took 3 full weeks to resolve following cessation of the abx. Similar to HSP, it is due to a deposition of immune complexes in the joints, skin and other organs. To cover the bases they also did a work up for acute rheumatic fever. I just thought it was worth a mention..... good luck

thanks for posting.. off for a read

Sorrym don't want to hijack the link but- LLM - Hi - you said your child's urinary issues aren't PANDAS, have you pinned down another reason? Also an aside but with pyroluria, can taking zinc without sufficient levels of B6 cause vomiting or can that be caused by B6 deficiency other than caused by pyroluria? I've tested as compound heterozygote c1298a and c677t like my dd and have in the past but not now, vomitted when I took zinc supplements, about 1/2 hour after taking. It happened twice and could see no other cause. I'm wondering if I should consider testing teh kids for pyroluria too.... thanks.. Airal95 - my ds4 had a great response to 2 weeks of 2x a day ibuprofen. he wasn't at a 10 but was maybe a 7 on the scale lots of tantrumming, mean, defiant, hitting, punchin etc maybe some OCD/tic type spitting and some raging. We had, we think, got rid of the initiating infection and the ibuprofen seemed to allow his system to calm down. i think it's all BBB related for him but just my opinion. He was fine until re-triggered by another infection. however, we aren't dealing with recurrent infections like you seem to be....

Hi - Our ds will get the allergic looking shiners under his eyes but not bags. As for the test - is it the tryptase test? If so, it's a measure of mast cell activity. Here's an ok explanation... http://labtestsonline.org/understanding/analytes/tryptase/tab/test

No, you're right... the nasal spray sort is OTC. It's the oral solution that rx.

Hi - I (think) that mastocytosis is severe and fairly rare. I imagine that if you have it, you now about it. However, there is a lesser disorder called Mast Cell Activation Disorder MCAD that is caused not by too many but rather by badly behaved or misshapen mast cells and that is harder to diagnose and I believe is dxd by clinical picture and response to therapy (nothing new to anyone here eh:)?) I just got thinking 'cos of DS' itching. My brother also has idiopathic angiodema which I suspect is this too. Badly behaved mast cells can be implicated in GI issues, interstitial cystitis, skin isues eg hives/blisters and they also can impact BBB permeability. I just wondered if for my ds and maybe others, there are autoantibodies circulating but for him the trigger that allows them access to the basal ganglia is mast cell degranulation and that this comes along with some physical symptoms associated with the gate-opener, so to speak, rather than the PANDAS itself. It might also acount for why some kids react almost allergically to their triggers. MCAD and mastocytosis reacts that way, with an immediate response. Mastocytosis triggers can be infectious, environmental, stress, foods, food additives, chemicals etc. We are using cromolyn for the itching. It's very difficult to get him to take it 4 times a day like we need to but when we really comply we seem to get a lessening of itching, less stomach issues and maybe better PANDAS symptoms. We haven't complied with the dosing well enough or long enough for me to really tell but it will be interesting to see where it goes... I imagine that a trial of a mast cell stabiliser such as cromolyn sodium would tell you whether this was an issue causing GI troubles. Beware it is uber expensive for the oral preparation - for DS $800 per month :-0 thankfully, our insurance will cover it. There is a nasal/bronchial pump version but that is used for localised asthma symptoms. There is another stabiliser that I have seen mentioned but know nothing about. It's called Ketotifen, I believe.

Juliafaith - it has been a while although I do stalk you from time to time on the Lyme forum You seem to be deep in treatment. How are things going?