mom2yo

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 that night got sick had affected him. additionally, having posted that story, people on the forum, suggested he try another steriod burst again since he is a big boy, and has been like this for as long as we can remember, and that the dosage of 40mg and tapering down seemed low. Dr. B agreed to try it again but we had to wait a few months before doing so. In the meantime while waiting to do it again, let me tell u that while at first my dh was quite skeptical, he is now on the wagon with pursuing this route. My ds has been on antibiotics all these months, no major differences, but what was quite unbelievable to see, and what clinched it for my dh, was when we were out for dinner with our family one friday night at a friend's house. My son's neck tic (which btw only just began end of august which ultimately lead us to finding oyt about pandas)had been doing a bit better that week. While at our friend's house, we noticed and frightfully so, that my ds's neck was "tic"ing every few seconds. we were ,like "what the heck is going on? oh my G-d!!!". Our friend in conversation a few minutes later was just saying how her daughter was home from school that week for a couple of days with strep. "Oh my G-d" again i'm thinking..we r in a strep house and this is a direct correlation, right?! clincher! The next day, just by being out of that environment and with a couple of advil, things calmed down. tic was still there but considerably better! Fast forward, these past couple of weeks, his neck tic seems to be just about gone! (antibiotics kicking in perhaps?) The ocd is totally there though. Anyway, our waiting is finally over and we started the steriod burst agin. This time at 60mg (will be tapering down over abt 21/2 weeks.) Today is day 4. I am so, so nervous and can hardly breathe. I know that it can take a while to see positive results (if any), which i am praying for. Already day 2 on way to busstop, he didn't do one of his ocd behaviors,he didn't ask my dh as he ALWAYS does about the time on the car clock which he knows is 2 minutes fast. he always confirms "daddy, its really 7:12, not 7:14, right?" (he doesn't question time other times he's in car, just every morn. on way to busstop!... the little things in life we get so happy for...) But what's killing me is that yesterday while on the steroid (day 3),he did not do well at dinner with behaviors (ok so it can't all go away at once, but it was on the higher end of the scale... shouldn't it be at least the same, not worse.) He was controlling with conversation, saw his neck tic a couple of times , and when he wouldn't/couldn't(compulsion) let my dd speak, he went into a very loud "lalalalalalala" to keep her from doing so. Anyone looking in from the outside,( and inside included) would have thought, omg, this kid is absolutely crazy! i know it's the ocd, he can't help it. This is just one little example (obviously there is so much more), but i want so badly to see him improve. I don't even expect miracles from the steroid (although that would be nice!)...i just want it to work so it can be our indicator of sorts. (and the fact that ivig for all we know won't be covered by insurance is a whole other concern.)But for now, i just want to see the steroid work!!! Has anyone seen their kid(s) 's symptoms get worse while on the steroids? shouldn't behaviors get better? (even if one says, it can take a couple of weeks, shouldn't it just then stay as it was, and not seem to get worse?)..i am so on edge. please give me hope, mom2yo

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 really helps, so thank you! mom2yo

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

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 to say the least with all the waiting and not seeing much, hoping, praying, and wanting so badly for him to get better, as everyone reading this can i'm sure understand and attest to. Anyway, we asked Dr. B about doing another steriod burst at a higher dose, which he agreed to, but he doesn't want to do it for at least a month to give the body time between the bursts. The purpose would be to see if there's change so we can see if indeed this is an auto immune disorder. (i still laugh and cry at how i wish soooo badly for my child to have this...just want answers and then results!) We told Dr. B about all i've read on this forum about the inositol and he was very open to us trying it, saying that he has a bunch of patients who are doing very well on it. The plan right now is to do that for 2-3 weeks and see if there's any change. If no change,then the next step will be to try Cipro for 2 weeks, and then if still no change, then after that we could try a steroid burst again. (ivig is not really an option if he's not diagnosed with pandas.) So, for now, we r going to try the inositol.(one thing at a time so if there is change, we know because of what). Can anyone please help me with explaining what i should do with the inositol? meaning what dose? do i build it up? what incerements? any particular brand? with or without food (does that matter)? My ds 17 is a full sized adult weighing about 180 lbs. please advise. thanks so much, mom2yo

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 antibiotics and had a steroid burst w/o any success (except for a couple of better days on the steroid) as some of u may have read on my "praying for a miracle" thread. I keep reading and reading, and i feel like my head is spinning..don't know where to turn first...how does one know what to do, where to go, what to be tested for, etc... thx, mom2yo

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

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?)

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.....

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

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 everything, keeps his things orderly in such a way, goes crazy when anyone goes in his room, yells at my dd's whenever any of them sing or even hum, repeats himself a lot asking the same thing over and over (which i always had thought was either processing issues or the attentional issue), and my laundry list can go on as well. My ds has been like this for a long, long time. He's never quite fit the mold with anything, and nothing else has ever worked. So when i first heard about pandas a few months ago, i got hopeful and said oh, maybe that's why nothing's ever worked. I know that if this is it, that it will be a process, and will most likely take a while. I can handle that, although i know it won't be easy. I just still don't know for sure that this is it. i got into a bad rut this past week, and today i am slowly but surely climbing my way out of it....It's not easy especialy as i am also dealing with my youngest dd10 who sees s/o for her anxieties, and i really think she may have ocd too (also not in typical manner but she has obsessive thoughts and fears)...It's been crazy for us here lately, and so i let myself get down. I truly thank you and every sinlge person who has taken the time to share with me. This forum has been so helpful and supportive these past few days, and it is has given me hope, strength, and i am going to get back to being the warrior mother that i need to be! thank you to all of u, mom2yo

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

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

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 will get better... if I knew in the long run, that will be the case, i'd be so much calmer. The funny thing is that only in the last few months since we started down this pandas path, do i feel all crazed (again)...that's because i see a ray of light and i'm so nervous it will get taken away. With everything we've ever tried over the years to help his behaviors, i would get hopeful or be optimistic, and then that too didn't do "the trick". Over the years with nothing working, i figured this is who he is and over time he will mature and get better. after all, he only is really bad at home and does better hiding a lot of it in front of the rest of the world...but i often wonder and worry of whether he can function normally in the world? additionally, i wonder if perhaps my other kids have pandas too but in a milder form. I have made all of us patients at Dr. B, not just my ds, so that they can be monitored as well. i know time will tell, and so i continue to pray! mom 2 yo

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. we are all having our blood drawn again when at Dr.B next so we can see how the #'s went and if we can start seeing a trend. I really wonder what impact all of us may have on my son, as obviously germs can keep circulating, but that can also be from anywhere too (i.e school).

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...