Kiera

I found melatonin in flavored liquid drops from our local farmer's market/health store called "Sprouts". 10 drops is 1mg, I only have to use 3 drops (ie 0.3mg) half hour before bedtime and he goes out like a light-bulb!!

Yes, I too would just like to get the inside scoop on the timeline of treatments they did - any steroids, IVIG etc. Also, did he get strep throat often, hence the tonsillectomy, or was that purely a preventative measure? Thanks.

One other thing to consider - I think I read somewhere about the NIMH study currently on IVIG as a treatment, that you won't qualifiy if he's had a steroid recently. Your son would qualifiy because of recent, sudden and initial onset, but he may need to have elevated strep titers to qualify also (they want to keep the participants as clear-cut as possible). Just a thought to look into the qualifications in case you decide to go that route!

Question - if the thyroid function tests are in the normal range (as are my ds's) then how do you know if they're hyper or hypo thyroid to treat? Or do you presume them to be hypo and treat with thyroxine and see what happens? Just not sure how they determined she was hypothyroid if levels were normal?? Thanks.

Just wondering for those of you who've seen the expert PANDAS Drs, with initial visit, do they have your child checked for effects on the heart? Is it common to have rheumatic heart affects as well as brain affects? Is it part of an initial evaluation to check for strep effects there? Thanks.

PS, my son is also on prevacid daily for stomach protection, for the duration of the steroid, as steroids are severe on the stomach and should be given with food.

Hi NMom, My son is on day 16 of a 45 day steroid taper, initial dose 45mg/day for weight 58lbs! He too has the moon face, ravenous appitite (a good thing in his case as he's underweight). Weekly checks for BP and sugar, OK so far. Today he did complain of hard to get air in, but I think it's due to all the extra food in his abdomen and fluid retention causing him not to expand his lungs as effectively, he felt better after going to the bathroom. The headache your son experienced was probably due to the higher BP, which does need to be monitored. Remember, our kids are on an immunosupressive dose of steroid to halt the autoimmune process in it's tracks, not just an anti-inflammatory dose as is ordered for several other conditions. If sugars do by chance become elevated the Dr said it needs to be treated with oral hypoglycemics or insulin till the steroid is complete. (BTW, sugar needs to be tested fasting to get an accurate reading, it's going to be elevated right after a meal). Also your child is at a greater risk of infection right now, so keep that in mind if he develops fever. Hope this helps and hoping for a good result for both our kids!

In my ds's case, it's a neurologist (and pandas believer) as part of a complete neurolgy work-up as my ds has had many issues since age 2 of which pandas is the most recent. I think it's more to get to the bottom of his issues as opposed to PANDAS related. 1st time to see neurologist.

Sorry guys, let me clarify. Currently my ds is on a 45 day Taper, started tapering after day 10, to finish on day 45. This has been ordered by a very forward looking pediatric neurologist in a major childrens hospital, but not one of the main PANDAS experts on the east coast or Chicago. She has ordered a complete neurological work-up (my ds has had issues since age 2, new issues every year, culminating with a PANDAS diagnosis last year) but he's never seen a neurologist. Dr's also checking the kidneys and heart for signs of strep there. The 5 day steroid dose I was refering to last year was actually ordered by his regular MD because of a nagging cough he had post chest infection (later realized it was a tic when it didn't go away). It was given for the cough (tic) but calmed his rages, irritability by 70%, I realized it was pandas, went on to find pandas Dr, started antibiotics, he progressed to 100% recovery over several months until the next flareup this year. So here we are, trying to get to the bottom of all his ailments, and treat the PANDAS more aggressively.

My ds 8, is on day 14 of a 45 day steroid burst and I too am kinda scratching my head. Overall I would have to say he's worse, very sudden rages, followed by laughing and acting normally?? I have read on here that some folks had not seen improvement until after a couple of weeks so I'm holding out hope that more time will help. When he was first diagnosed over a year ago, we did a short 5 day steroid and I saw huge improvement on day 5 so I'm kinda diassapointed this time, but I'll wait and see what happens. Keep us posted with your child.

My ds 8 is also having an EEG this Monday. I was told to keep him up as late as possible and get him up at 4am!! The lady said he'd be pretty grumpy (no kidding) to which I replied he's always grumpy (due to pandas) that's why we're doing the test!! Sorry I don't have much advice for you, I'm in the same boat! I just plan to bring as much to occupy him as possible, portable DVD player, DS game system, bribe him with a reward afterwards etc. He's got lots of sensory issues also, so I hope the gel in the hair doesn't become an issue, if it does, there's no hope!!! Hope yours goes OK.

I myself have some mild spinal stenosis from arthritis which causes bad neck pain, I try to avoid taking ibuprofen too frequently, so recently, in addition to the usual fish/flax oil and glucosamine supplements, I added a curcumin supplement and I have to say it has worked wonders! it has taken the pain from a constant nagging and annoying pain to me not even thinking about it, so I'm a believer in curcumin for sure!

Hi Nmom, looks like our sons are on similar tracks right now. My ds 9, is on day 9 of a 45 day high dose steroid taper. We don't have any urinary issues, so sorry, I can't help you . So far, I have not seen any improvement, maybe even a little worse! Strep is in school, I'm afraid he'll get exposed while immunosuppresed. Also, we have to go for BP and blood sugar checks weekly, so far, so good. I'll be interested to see how it goes for your son, keep us posted.

My ds's skin and blood tests show he's "allergic" to almost everything, yet he's never had an anaphylactic reaction to anything!! We're tried a rotation diet to see if that made a difference, but had to abandon that due to very low weight, and a nightmare to do with a picky eater! So what does this all mean? Still haven't got a logical explanation, even from the allergist! From what I've read here, PANDAS kids fall into either the "over-reactive immune system" (my child, rarely gets the usual bugs that go around) or the "under-reactive immune system" ie. kids always coming down with infections or IGA deficient. The over-reactive group explains them being susceptable to PANDAS and autoimmune disorders. Sorry, I'm not much help here, but it's probably worth a try getting it checked, I believe the more information you have, is always a better way to go, and you never know what you'll discover along the way!

I've just started my ds on a 45day tapering burst and just wondering did any of your kids get infections during the burst, due to immunosuppression and if so, what did you do, continue therapeutic dose antibiotics??

Ditto on the end to bedwetting on a GF diet. In fact, my ds's regular Ped said he suggests this to parents who can't get their kids night-trained. I think it works by reducing brain fog, so their bodies can sense to hold it in or go to the bathroom. Even though I've since abandoned the GF diet (low weight problems) the bedwetting never came back!

Just bumping this old post for you Airial95 in case you missed it!

Most likely PANDAS! My ds's smell always gets hightened with pandas flareups, sometimes even has to leave the room around certain foods that usually are no problem. (he does have sensory processing disorder, but the smell thing only shows up with pandas).

Agree with all the above, so check out www.canaryparty.org, at last people are organizing to fight these very issues! Hope is around the corner!

Can anyone help clear this up for me? Your child is on daily prophylactic antibiotics and behavior deteriorates, is there any point in swabbing?? My PANDAS DR (not and expert) said there's no point as he's already on antibiotics, the culture will be neg! So for the last year, I never swabbed him with exacerbations, just bumped up to therapeutic dose, according to behavior and proof of exposure. So right now his behavior is again deteriorating and we're seeing a new PANDAS Dr in a couple of weeks so I brought him in for a swab just to see, and sure enough, it was negative (aswell as send in), just like the PA in the Dr's office said too. BTW, his blood ASO has not been in the normal range since diagnosis a year ago, DNASE has just returned to normal since June! So my question is, is it possible to have positive swabs while on antibiotics, or what guidelines do most people use to increase dose to therapeutic, do most people even bother by confirming with a throat culture? Thanks.

You are not alone! There's just something about how dhs (mostly, with some exceptions) deal with neuropsychiatric illness'. My dh is the same. He accepts and understands the syndrome yet when my ds is raging and screaming he says he needs a good spanking!! (which I don't allow). "His brain is inflammed" just doesn't seem to resonate at those times. Just another cruel aspect of this illness we have to deal with. If our ds was going through say chemo, and screaming at having needles, would you be saying "he needs a good spanking"? I think not! So hang in there, you're doing the best you can and that's all you can do.

Just checked my ds's pandas log as I remembered a rash - it was a year ago, just after diagnosis, on day 9 of starting amoxicillin, not hives per say, but small red bumps all over. I was sure it was a reaction to the amox but the Dr said no, there are lots of viruses that go around that can cause that, so we continued on with the amox and it went away in 3days. Timimg was just a co-incidence I guess!

Wow! Thanks for all the responses - seems like a mixed bag, but not a cure all for most, as in the article, but also one less thing to worry about. Going to ask the pandas Dr at next visit!

Thanks for all the insight! Bill, I can't imagine why they didn't just take the adenoids when they were in there? Ts and As go together like salt and pepper, strawberries and cream......I'm off to the Dr for a throat swab in an hour for my ds, didn't completely get over the last exacerbation back in April and here we go again:( Will continue to ponder the tonsillectomy issue.

You know my ds has the same problem off and on. Doesn't eat veges either, it's not all the time, just every once in a while this completely bright nasty looking green color and I can't relate it to anything in particular, he's been on the same probiotic for a long time mow. Sorry not much help here, hope some others might have an answer!