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mom2yo

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  1. We have just started a steroid burst (or is it called a taper?) a few days ago. Before i explain more of that, i want to give a little background. My ds17 has ocd (we r assuming pandas), and had/has a tic. All of these last 6 months or so on this new journey for us, has been unfortunately so far w/o much results. Back in November, we had tried a steriod burst, and day 3 and 4 were pretty good with mood. just an overall calmness and happiness to my ds that is not usually there. it was like 'wow, so nice to meet u!' by day 5 things went downhill, back to normal. perhaps that one of my girls th
  2. Hi i just wanted to say that from one mom of a 17 yr old ds to another, and with a lot of similarities, i totally hear u on everything..and i had to tell u that i love ur user name because that's exactly how i (and i'm sure many other moms (and dads) feel)tired! We have gone from 1 specialist to another over ALL the years and we too just came upon pandas recently (about 6 months ago). Of course, no matter how "tired" we feel at times, and i do a lot, we have to persist and pray that all will be ok. I wish u all the best and hope u find the answers. and to everyone else that shares, it
  3. Thank u Ozimum and LLM for ur feedback.. Do u or does anyone reading know of any good DAN drs or others professionals that can help us with this in or close to the north area of New Jersey? thx, mom2yo
  4. We saw Dr. B this morning with ds17. We have already done antibiotics (augmentin, biaxin, and then back to a higher dose of augmentin) and one midlevel steroid burst as well(40mg and tapering down), and haven't seen much improvement. On the steroid burst we had 2 better days, but Dr. B said it wasn't long enough or enough of a change to "count" as being diagnostic. My ds is just not a clear cut pandas kid although he has the ocd and a recent tic, along with other "stuff" (sensory, attention, learning issues). So what do we do next, of course, is what we wanted to know. It's been very hard
  5. I am getting a better sense of methylation from this thread as well, as the other one was way over my head (and my eyes are starting to hurt from all the reading and research i've been doing lately). Can anyone explain to me how do u go about getting these tests? Is this s/t i can discuss with Dr. B at our next appt in 2 weeks or is this not under his forte? is this s/t u do under a different type of specialist??? And who excatly is Yasko? My ds17 also would fall under both sides of the chart that was posted on this thread. E/t is all pretty new to me, and right now we r trying antibi
  6. Hi oivay, so happy to hear that ur dd is doing well, but i am curious, why did u go right to plamapharesis and not try ivig first? How old is she? thx, mom2yo
  7. What excatly is homeopathy? (i know it means doing the non medical approaches, but in this case, what does it mean, what does it entail?)
  8. My ds touches everything arbitrarily. He'll run his fingers over anything and everything and do it for a few seconds in oh such a way...can be s/t on the table, moldings, top of chairs, the bottom of a soda bottle or the salt and pepper shaker...you name it. Although it's bad and obvious, he controls himself more outside the house, but i'll notice him doing it. It's the screaming and rages that are beyond difficult.....
  9. bmam, Hi. what have u done so far in regards to treatment? u said u r starting ivig? have u seen improvements since u started this journey (which was when btw?)...I have a 17 year old ds with whom we r now looking into pandas as a diagnosis. Bringing him up has been quite challenging to say the least. I am curios abt where u've been with this so far since u also have older kids. i too am hoping and praying (figuratively and literally) for success! wishing everyone success, mom2yo
  10. All i have to say is WOW! I really have a lot more to say, but that is the first thing that comes to mind...WOW! It truly is unbelieveble that our kids can be walking around for so long with all their behaviors and "stuff", one can go from one specialist to another (us trying many, many things over the years!) and no doctor ever telling us that our kids have ocd. So, nicklemama, i totally hear u on that! Our ds is also not the typical hand washer, has rages, explosions, seonsory issues, attentional issues,and learning issues. To name a few of the ocd behaviors, he goes around touching ever
  11. dcmom, thx abt the info on the therapy. I recently was told abt that but while that is s/t i will probably have to do for my ds at some point, first we have a lot of the medical pandas route to take. someone, btw, also told me abt this intensive 3 week program in florida that works on these lingering behaviors in case u or s/o else needs s/t like that, it sounds quite interesting. all the best, mom2yo
  12. Nicklemama, How old is your ds? or how old was he when u started w/ all this? what is the road u've been on to get to this point of doing well? U said u had seem many doctors? was it because ur ds had a geshtalt of issues like my ds over the years and not just the ocd? When i first heard of pandas i got excited. Then with not much improvement with this already 3 month journey, i stared to get depressed but I am trying to crawl out of the rut i have been in, slowly but surely, right?! thx, mom2yo
  13. thx for ur suggestion. i will start to compile what will be a VERY long list. My dh read this post last night as well, and told me that my ds who my dh wakes up every morning and then drives him to the bus stop for years, has been waking up lately w/o screamimng at him, and has been better in the car en route to the bus stop....that is a change. He still continues all of his other behaviors, but maybe documenting and rating it will show me more...It's been a rough few months, hoping, waiting. I know everyone says it's a long process and to be pateint. I will try to be, i just want to know he w
  14. My ds was first on augmentin 875mg 2x day for 3 weeks initially from pediatrician before we got to Dr. B. Then Dr. b switched him (since we didn't see any changes at all) to Biaxin 500mg 2x aday for a month, then back to Dr. B with no change, he switched him back to augmentin xr 2000mg 2x a day, we r still in the midst of taking that till we see him again in 2 weeks, and also currently on the steriod burst of prednisone (started at 40 mg tapering down). additionally, all of us in my family, besides my ds, went on augmentin for a couple of weeks b/c all of our strep titers were elevated. w
  15. so as it turns out, i made a mistake...my ds started actually on 40mg and had been tapering down from there. the short questionable improvement on day 3, 4, and part of 5 was while he was on the 40 mg. He tapered down to 30 mg on day 7.today was day 10 with 5 days to go tapering down along the way. I will ask dr. B of course, but i heard that he isn't big on giving high doses of prednisone. perhaps he wanted to see if this amount would work? do u think my ds may have needed more and so it wasn't enough to sustan anything? he is after all already a big boy of 17yrs and abt 180 pounds...
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