worriedmommy

I would definitely be interested in meeting face to face.

Strange, but this is a new tic that my daughter just started today. She literally looks like she's milking a cow with her right hand. Like your son, she also said she was doing it because her finger tips are hurting. I casually told her it might be better to not do it if it made her fingers hurt, but she said she had to keep doing it to "check" that they still hurt. My daughter's main issue is tics, but I've never seen this before. She just ended a 5 day steroid burst yesterday (during which she had extreme mood swings). Her other tics seem to have subsided a bit today.

I am planning on attending.

One more question regarding prednisone. Is there always a taper at the end? Dd took 15 MG per day for 5 days, and the course ended. Should it have tapered down, or is this normal for a 5 day burst?

Still hoping (OK..praying!!) for a dramatic turnaround. It's now day 6 (her 1st day off prednisone) and dd was an emotional wreck again this morning. She started the day with a complete melt down about what to wear. She was literally screaming at me and hysterical. Then 20 minutes later she hugging & kissing me talling me how much she loves me. She's at school now, so perhaps things will start to turnaround by this evening.

Yes, she is on Azithromycin right now. She was tested for mycoplasma last month, and she doesn't have this. No, I would not say tics are over the top since starting. Over the top in my book is how she was during her sudden onset of tics in February, when she was ticcing ALL day long, and had many different tics (knee bends, facial grimaces, abdominal jerks, facial grimaces, throat clearing, neck extensions & shoulder shrugs). Many of these would happen at the same time, or one after another. She was literally exhausted at the end of the day from ticcing so much. -- What we're seeing now, is mostly the throat clearing, and she'll have periods of time when the throat clearing is every few seconds for about 15 minutes...and then it all stops and she's tic free for the next 10-15 minutes.

Dd, age 6, is on her 5th day of a 5 day Prednisone burst. I had such high hopes that we'd see dramatic improvement from the Prednisone, but we haven't. If anything dd's mood has become worse. As the days of the burst have progressed she's become more and more sensitive, moody & rage filled. Her anxiety has remained the same throughout the burst. I can't tell if her tics have improved or not. At her worst, she tics every few seconds all day long (except during sleep)...so up to 10000 a day. Prior to starting the burst, tics were about 1 every 2-3 minutes. For the past couple of days the tics seem to come in spurts. She'll have a 15 minute period where she'll tic every few seconds...but then they'll stop and she'll have no tics at all fro 10-15 min. So, she's having definite blocks of time that are tic free, but then they'll come rapid fire for a chunk of time. I'm so discouraged about all of this. I'm wondering if we're even on the right path...is this really PANDAS (Dr. T & 2 other neurologists feel it is), or are we dealing with TS? We had such a fantastic response to a 20 day course of Biaxin in March. Tics DRAMATICALLY decreased, anxiety very minimal, and her mood was the best it has EVER been. Once off Biaxin, we saw an almost immediate increase in symptoms, and then upon starting Azith. on 4/14/10 (which she is still on) we saw improvement again. I have no idea if the dose of prednisone was too low. She weighs about 50 pounds, and the dose is 15 MG per day. Or...if she simply does not have PANDAS. We are currently awaiting the results from the Cunningham test, that we sent off last week...so that will hopefully clarify things one way or another. What I'm wondering is if anyone else out there saw and increase in rage and moodiness during the burst in a child this young? (From what I've read, I thought that young kids respond early in the burst.) Any responses are welcome. I'm having a tough time dealing with all of this.

I posted this same question on Dr. T's PANDAS forum, and this was his response: "Mast cell activation is critical in eosinophilic esophagitis http://www.ncbi.nlm.nih.gov/pmc/articles/P.../nihms95164.pdf And can you guess what can activate mast cells? (note this is not S.Pyogenes, the PANDAS streptococcus, but not that different) http://www.ncbi.nlm.nih.gov/pubmed/19933827 So one possible mechanism is strep infection > mast cell activation > EoE. Food allergies worsen things, but may not be the entire cause There is no doubt in my mind that the two conditions are somehow related." Interesting....

Interesting that you mention a throat clearing tic. This is dd's main tic...during an exacerbation, she was doing it literally 10000 times a day. It really isn't a true throat clear. It has ranged from an airy cough noise to a loud breath noise (like Darth Vader from Star Wars), to an almost grunt like sound. It was this throat issue that first got us on the PANDAS track and also prompted the referral to the GI. I should also note that her throat issue seems to always get worse when eating.

Our experience is that Zyrtec will provide some immediate relief, but takes about 1-2 weeks for the full effect. My daughter has severe seasonal allergies, and the tree pollen in spring is the WORST. Last year it was so bad that her eyeballs swelled and she had bleeding in one of them. She was on Zyrtec most of last year, and still needed a course of steroids to get through spring allergies. (This was all pre-PANDAS...or at least before we knew about PANDAS). Anyway, this year we've switched things up a bit. She's taking 2 nasal sprays...Veramyst (a steroid) in the morning and Patanase (an antihistamine) in the evening, and no oral allergy meds. She also just started this week with Zaditor eye drops for itchy eyes (we're doing these every morning now that the trees are flowering). So far, so good.

I have never had Lyme, but keep coming back to this as a possibility with dd. Two years ago she had a bite on her arm (not sure if it was a tic, insect or spider) that swelled, got warm, and in my opinion had a very faint bulls-eye look. I tried to take a pic of the bullseye, but it was so faint that the camera didn't pick it up. Of course by the time we saw the doctor it had faded a little more and I was told it was not from a tic. Anyway, over the course of the next 4 days her arm got painful, and the doc would up putting her on abx (10 days) which resolved the physical symptoms we saw. However, the more issues dd continues to have keep me coming back to lyme, and that bite. I went on ilads.org and got the name of a lyme-literate MD in the state, so I guess that's the next step. Would you recommend getting the IGENEX test too?

Yes, she has been tested by blood for celiac disease, and it came back negative. Also, the GI doc said he saw no signs of celiac disease duing the endoscopy.

Dd did have a Western Lyme Blot (not Igenex), and tested positive for the band 41 on both IgG & IgM, as well as band 66 on the IgG. Not sure if either of these could be relevant, or if EE is found in Lyme patients.

What I was told is that EE is simply an inflammation of the esophagus caused by the presence of high levels of eosinophils. Eosinophils are a type of white blood cell that are not normally found in the esophagus. High levels of eosinophils often indicate an allergic response. So, it would seem that since these eosinophils were found in her esophagus that she has EE. I haven't found anything yet telling me that something other than an allergy can cause this...but, like I said, I feel there has to be some connection.

Hi there. A couple of weeks ago I posted that my dd (age 6) was having swallowing difficulites. She had these issues as a toddler, but after her tonsils were removed at age 4, symptoms dramatically reduced. It is only recently that these issues seem to have resurfaced, and the timing coincides with her sudden onset of multiple tics...which according to a couple of neurologists (and Dr. T) is likely PANDAS. Anyway, dd had an endoscopy last week, and I was told today that she has Eosinophilic Esophagitis (EE), also referred to as Allergic Esophagitis. Does ANYONE have experience with this? It is a medical diagnosis from biopsies they took from her esophagis, so there's no question as to what it is. Apparently this is usually the result of a food allergy, but unfortunately blood & skin prick tests are often not effective at determining what the offending food is. Dd actually already had a blood test in Jan for egg, milk, wheat, gluten, nuts and soy...all results were negative. However, according to the GI this negative blood results does not rule anything out as EE is often caused by a delayed allergic response. I'm having a hard time believing that this new dx is not somehow linked to PANDAS. In the past 12 months dd has had dx of asthma, dx of severe seasonal allergies, 2 peri-anal strep episodes, 1 case of strep throat, 2 cases of explained high fevers, presumed H1N1, 3 separate episodes of a strange itchy rash on knees and elbows that stays for approx 6 weeks, then peels and goes away, only to return 1 month later, sudden onset of multiple motor and vocal tics (went from 0 to 10000 tics per day, overnight) and now a dx of Eosinophilic Esophagitis! --There HAS to be a common thread holding most, if not all, of these items together. I simply cannot believe that my full term, healthy child developed this many separate issues in a 12 month period. I'd love to hear from anyone out there who knows about this, or has experience with it. Thanks.

I should also note that dd is not on prophylactic antibiotics at this time. This all started with dd getting strep (peri-anal & throat) in the fall of 2009. Soon after she developed a tic-cough that she'd do 8000-10000 times a day (very much like Lauren Johnson's sneeze tic). We tried a round of abx in Dec and the cough got better,but came back after the 10 day course. Did another round of abx in January and the cough went away completely for 2 weeks. Then in Feb 2010 she had an explosion of motor and vocal tics, at a time when she had 11 confirmed cases of strep throat in her kindergarten classroom. She had throat and peri-anal swabs, which came back negative, and her titers were tested and were low (13). In March her tics were still constant, and we found Dr. T. He had a lot of blood work done. Titers still low (now 29), and she tested negative for mycoplasma. The bloodwork included a Western Lyme Blot (not Igenex) which showed positive IgG & IgM for Band 41 and positive IgG for band 66. This was interpreted as a negative Lyme test by CDC standards. Her blood work also showed low total IgG levels, with subclass 1 & 4 deficiencies. Dr T then put her on a 20 day course of Biaxin, during which she did VERY well and tics decreased dramatically. Behaviors (that we never would have attributed to PANDAS) also got SOOOO much better while on Biaxin. After the course ended, she started to backslide back into more and more tics and behaviors and fears returned. We then tried Motrin alone for a week with very little effect. Now back on azith (started yesterday) for 10 days to see if we see imporvement. We are also going to do a prednisone burst, but have to wait to do the Cunningham test first (which is supposed to arrive today.) I just still find myself struggling to believe that this is really "real" with her. I have heard from Dr. T, Dr. K & Dr. Latimer that high titers don't rule out PANDAS...I just wish there was somethihng conclusive to rule it in or out.

' That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others. Yes, we do believe strep to be the trigger. My daughter has had multiply positive cultures...mostly peri-anal strep, and 1 case of strep throat, which preceeded the sudden onset of tics. ASO & Anti DNase-B titers were VERY low.

' That's good to hear. I still feel like I'm constantly trying to justify what we're doing with dd to others.

I was explaining PANDAS to a friend. When I got to the part about ASO titers, and explained that my daughter has low titers, my friend asked what good antibiotics are if titers are low? I was stumped. I feel like a complete idiot that I can't answer that question, especially considering the fact that my daughter IS on antibiotics.

Not sure if anyone is from the NH area, but I found out that Beth Maloney, author of Saving Sammy is going to be at Barnes & Noble in Manchester, NH tonight at 4:00 pm. this is actually very close to me so I'm going to go. Has anyone else seen her or spoken to her. Not sure what it will be like. At the very least I'm hoping to maybe connect with other parents of PANDAS kids who may have some local doctor info.

My pediatrician ALWAYS does the 2 swabs at one time, and with the amount that my dd kicks, scrams, and bites during it, I'm surprised they ever even reach her tonsils. I think they do them both at once to avoid 2 separate struggles with the child. However, I can see how 2 thorough separate swabs would be best. Just hard to convince a scared child of that.

Thanks everyone for your comments. It helpful to know that there are others who have reacted poorly to their kids symptoms. I know that I have to be stronger for her (and up until the past couple of days have been holding it together pretty well), I was just unprepared for this current backslide, and took out my frustrations in all the wrong ways and on all the wrong people. Hearing other people's success stories are so inspirational, and I am determined to be able to share one about dd one day. I am working with Dr. T (who is awesome!), and feel confident that he will help dd on a path to recovery. On a side note, I'm going to see Beth Maloney tonight at Barnes & Noble in NH today. Should be interesting. I read "Saving Sammy" as was astounded by her son's PANDAS story. I'm curious to hear what she has to say....

Just wondering if any of you ever reach your breaking point with everything?? I feel like the worst mother in the world. My Dd (she'll be 6 next week) who we suspect has PANDAS has slowly been "slipping" into an exacerbation, and is suffering from tics every 1-2 seconds all day long right now. We have an Rx for azith from Dr. T sitting in the cabinet but our GI doc pleaded with us to hold off until tomorrow afternoon to start it b/c dd's getting an endoscopy tomorrow and they don't want the abx to mask anything they're testing. --I know I can make it one more day...but my temper is really getting the best of me. Dd is an emotional basket-case. She cries at the drop of a hat, is moody, defiant, scared of everything, has constant tics and does SO many quirky things. Yesterday I simply snapped as we walked down the hallway at school and she had to jump over every green square floor tile. Then in the parking lot had to jump over the lines. I nastily told her to walk "normal" and step on whatever was in front of her feet. Then at home she had to go down the steps...which she has to do backwards...and I yelled at her for that and made her do it forwards...which of course caused crying!! Add to this her constant baby talk, and I'm ready to bang my head against the wall!!! To add to this my ds (age 4), has been displaying some odd behaviors lately as well. I am struggling to figure out if whether he could possibly have something wrong with him, or if he's simply copying his big sister (who he adores). I feel like my kids can't even be kids anymore without me constantly analyzing every thing they do. Kids do weird things...so how do you determine what is normal and what is not? For years my husband has said that something was "wrong" with dd. He couldn't put his finger on what, but felt that her behaviors were not normal. I just thought he ws over-reacting. He is VERY laid back, so I just assumed that he simply didn't understand that kids are quirky. Well, it took dd going from 0 tics one day to over 10,000 the next for me to finally realize that he was right. I feel guilty b/c all this time I've had my head in the sand about her odd behaviors. Ughh...I know this is just a lot of ranting, and feeling sorry for myself. I have to believe I'm not the only one to feel this way though. Any suggestions out there??

Interesting...I wonder what the cause of the false positive is?

She actually had 2 cases of 5 day high (103 F) fevers last year. One in May and one in Nov. The one in May occurred right after the onset of severe seasonal allergies...so her eyes were an absolute mess. Her eyballs actually swelled to the point that one had bleeding within it, and she had that the white of her eyeball had a bloody patch for almost a month. So red eyes were there, and they were runny, but allergies were thought to be the cause. At the time she had peri-anal strep, which went undiagnosed for 2 months. (We've since "fired" that pediatrician who felt it was more likely that dd was just "exploring" herself down there than it was that she had peri-anal strep. Ugh!) No mouth sores or chapped lips. The high fever in November came 8 days after she had presumed H1N1. I don't recall mouth sores or chapped lips then either, but do know that she had what we thought was pink eye sometime in the fall. I honestly can't remember if it was before or after the fever though. Can't even check medical records b/c I had left over pink eye medication that I used on her so I never took her to the doctor.