dcmom

boychildsmom- Tonsils. I don't have a lot of science on this. I asked my 2 neurologists if they would suggest a T&A, and they said yes. Basically, I feel if she can avoid any cases of strep it seems worthwhile. The ENT thought so too. He said there have been one or two case studies that indicated great improvement in pandas patients with T&A. He also confirmed that there can be dormant strep in the tonsils, just kept at bay with antibiotics. It seems a fairly routine procedure, covered by insurance, that may help us fight pandas. I wanted to get it done before we try IVIG, which we will if there is another flare. Mommd- Steroids. We have not done a steroid burst yet, but are considering if things get worse at some point. I know it is more of a diagnostic tool, and I know steroids have alot of side effects. But, could it be used as treatment (if it works), in conjuction with antibiotics, if child has a flare once or twice per year. I know that for some the effects of the steroids have been somewhat long lasting. Do you have any thoughts on this? IVIG- I am planning on trying if/when she has another episode. Can you comment on the safety/risk with IVIG? From my very minimal research, it seems to me, that the ivig product has significantly improved and there is very little chance of contacting a disease from the product. Although, even with that, many doctors and parents throw around the word "risky" when talking about treating pandas with it. This is making my husband somewhat nervous. I wish I had some concrete science to see what the risk is. Do you have any info on that?

My dd had rages as well. It maybe was not quite so severe, and she is only 5. She would hit me and call me names, so unlike her. I would try to hug her and tell her I love you, and I know you love me. Eventually when she would be closer to calm, I would offer a hug again. She always felt so bad after. I knew she didn't mean these things, and wanted to assure her that I knew that. It is heartbreaking to see their struggle. Hang in there, It will pass, she will get better...

Claire- Thanks for all your info. We have also had luck with 2 good and interested neurologists. Both of them feel having tonsils out could only help (though not solve) things. I know it is hard to tell if tonsils are cryptic untill they are out. I am very tempted to just cut through all of this bs and do IVIG. My only lingering thought is that so many have not been cured by IVIG. I have started to wonder if it is more of a treatment than a cure. Do you have any thoughts/ insight on that? Eileen

EAmom- My dd also had a positive culture with pandas. She is 5 and terrified of doctors and needles. We did one set of titers (in the normal range) after she had been on antibiotics for a few weeks. Her neurologist seems to want to see more titers (he thinks the trend is more important than the height of the #). I hate to do this with her, and kind of feel since we had the positive culture- its not necessary. Have you done much bloodwork? Have you seen a trend, even when the numbers are low? Does your dr want you to do titers?

boychildsmom- Thank you for sharing. It sounds like you and some great docs have a pretty good handle on your son's pandas. We are just at the beginning of this. What part of the country do you live in (in case anyone needs doc referrals)?

Mom MD- I am following your story- please continue to update us regarding your research on IVIG. My dd is 5, and had her first pandas episode starting in mid January this year. She is also at least 90% improved after months of antibiotics. She is not 100%. She is having her tonsils out this June (my pandas drs encourage this). I am seriously considering IVIG if she has another flare....

My answer is: I don't know. I have also read, here, that kids react when they are around strep, could this be possible? DD definately got worse when her sister had strep, even though she was on full strength cephalosporin. She has been great for 2 weeks, except the last three days had difficult seperation anxiety (and looks somewhat pale and tired afterschool- unusual for her)- and I found out her classmate has strep. She has been on zithromax, so she can't have it, can she? I can only surmise that when exposed to strep, it has been a problem. I will talk to her neuro about it at the end of the month. (I need to start making a list of questions...) Have you had similar experiences?

We have a CVS minute clinic, where I go to have the kids, and us throat cultured if I can't deal with the pediatrician that day. Two weeks in to pandas dd first course of antibiotics, her sister came down with strep, which seemed to cause a flare in pandas dd. The sister had no strep symptoms, only somewhat tired and a bit of a stomach ache. I would try to get sister swabbed if in any way you suspect she is under the weather. My pediatrician is a huge practice, I have lied and brought them in and just said they have a sore throat and stomach ache, just to get them swabbed. I don't really care, because they are not part of my network of doctors that help with the pandas stuff. Best wishes.

All kids seem to react differently. It took my dd 20 days on 200mg/day of zithromax to see a big improvement. I would try the zpack, and in the meantime try to work on finding a doctor that will be more liberal with giving you the antibiotics. I am very uneasy about keeping dd on zithromax, but at the same time I can't let her go back to that full blown pandas stage, it was awful for everyone, mostly her. We are trying to lower her dosing now, but not having great results. I have not done, nor do I know much about a steroid burst. It is a short period of taking steroids and tapering off, maybe 1-2 weeks. This should get rid of, although only temporarily, the brain inflammation. For some, I think, the effects are very short lived, for others it can last months. From what I understand, it is not so much a viable long term treatment option, but a diagnostic tool.

Yes! Hang in there! A quick synopsis: DD's pandas (with strep) episode. She had 4 weeks of symptoms (anxiety, ocd, rage) before we discovered pandas. She went on cefadroxil and had an immediate response. She was almost back to herself for one weekend. Then she backslid (it was heartbreaking) and was stuck in a somewhat better, but not herself phase for about 6 weeks (lots of anxiety, some ocd, no appetite, pale and almost sickly looking). All of that time she was on the cefadroxil, then amoxicillin, then zithromax. After 20 days on the zithromax she was really good (but if you add that up she was on about 2 mos of antibiotics total). I think you should give it 2 months on the zithromax before you get frustrated. Also, consider a steroid burst. My dd has gotten a little worse in the last couple of days (she just reduced to prophylactic zith), if this trend continues then I will try the steroid burst for her.

Well my poor pandas dd had two really great weeks. Now the separation anxiety is back, and the mornings are getting harder. Two things have happened this week: we lowered her to a twice weekly dose of zithromax, and yestarday a classmate was dx with strep (there must be a carrier in the class, they have gotten strep one after another, non stop, since probably Dec.). What do I do? Do I have her cultured (that is torturous for her)? Do I (on my own) up her zith dose (I have enough for a month), and explain to doc at next appt- when I plead for more? Do I ride it out, if she doesn't have strep and is just reacting to the classmate, she may improve over the weekend? Or is it that she needs a higher dose for some mysterious reason (immune- modulating)? Could the strep be hiding out, and the high dose of zith just kept it at bay? Would a steroid burst be helpful? Thanks, I thought it was under control, and now I am at a loss....

If you suspect pandas, I would beg the doctor for a month of zithromax. It is a fairly benign start to figuring this out. I think, if it is pandas, it may respond. My dd did respond pretty well to daily zithromax, but it took 20 days. (she was on a daily dose, not 5 days on- 5 off). I hope someone here can recommend a doctor. If not, I would call pediatric neurologists, and ask if they treat pandas patients....

DD is indefinitely on antibiotics. I am concerned about preventing yeast. She is VERY picky, and has highly sensitive taste buds (in other words there is NO sneaking stuff into her food). Since her pandas episode she has been even worse, and is resisting probiotic type smoothies. A GI I spoke to suggested BioGaia probiotic straws. Before I order (about $40), has anyone tried them? Do you know if they contain the right probiotics? Thanks...

My doctors also recommended screening by a cardiologist, which we did, and was normal. DD's psychiatrist (who is very pandas knowledgeable) told us not to bother with MRI's, catscans and even bloodwork. She felt they often missed pandas, and the titers did not always correlate. We had a REALLY clear cut, sudden, onset with positive strep culture at same time. Therefore, I kind of feel these tests could put doubt on a pandas dx to a questioning doctor if they came back normal. (DD titers came back in the normal range about 8 weeks after onset of exacerbation, and 4 weeks on antibiotics. Her neurologist felt that the trending of the titers was more important than one number. I am hesitant at this time to put her through a blood test again.) That being said, if a case is not so clearcut, it would be a good idea to rule out other issues. DD's neurologist did test for lyme (negative), which I do feel is important. Peglem- I am concerned about yeast. Can you tell me what type of dose of medication your child is on, and exactly what probiotics you use. My dd is five, and VERY picky with food. Right now, I am only giving her a probiotic shake from Robex a few times a week- I am concerned that is not nearly good enough. She has been on therapeutic abx for over 3 mos. We are switching now to zithromax 2x per week (but I am not sure if that will be enough).

Okay- I do not have a mind for science My dd was just diagnosed with pandas this year. She has had all/most of her major vaccines, and I was planning on delaying and/or not getting any more for a while. I certainly wasn't planning on the flu vaccine next year. But now of course the swine flu happens. Do these studies suggest that pandas kids could be in more danger? I assume most would not get the vaccine (if they create one)? Please try to break this down a little for me....

I would just like to add an update, as doing research on this forum and reading all the stories has been such a help to me. My dd's main issue were OCD and anxiety. We are keeping our fingers crossed, but she has finally improved tremendously. She was on 14 days of cefadroxil, 20 days of amoxicillin, and then 20 days of zithromax. I feel it was the zithromax that did it, but it didn't happen instantly. She is left with some urinary issues (feels like there is a drip, a lot of extra wiping). This was her first symptom. I am wondering if sometimes symptoms go away in the reverse of their appearance- due to the brain inflammation subsiding. She has a bad cold this week, and it hasn't stopped her progress. We will keep her on prophylactic zithromax for now, and are having her tonsils out in June. When/if she has another episode, we will go directly to a month of full strength zithromax, along with (most likely) a steroid burst, and hopefully/possibly IVIG. Thank you to everyone for your advice, and sharing your stories. This forum is so important.

Shaesmom- I am so sorry for what you are going through. It sounds exactly like what happened recently with my dd. My pediatrician missed it twice. First time I brought her for possible UTI because of urinary frequency and extreme irritability. After three more weeks of increasiny anxiety, rages, and some ocd-like issues, I brought her to the doctor a second time. I asked for a strep test, because I had read about pandas. The dr sent me home with vaginal cream and suggestion of "positive reinforcement" because of the negative quick strep. A few days later, the culture came back positive, and we started on this pandas journey. (That was in Feb '09). DD immediately improved on a cephalosporin. But regressed a little when her sister had strep the following week. She then went on amoxicillin for two weeks. At that point she was much better, but still very anxious and ocd. A new doctor changed her to zithromax, full dose, and after 20 days it seems to have really helped. We are about to go on a prophylactic dose, and I am of course nervous. He felt pandas kids sometimes need zithromax, if the strep is resistant, is hiding out or has gone intracellular. We did seek therapy from a child psychologist who works with ocd kids. She never worked with pandas before, but felt although it had some things in common with ocd, that it presented very differently. We found a psychiatrist and two neurologists who are interested in pandas. Unfortunately, I live in DC- so I can't recommend someone for you. I would contact as many doctors as you can and ask the receptionist if they see pandas patients before you set an appt. I have been on a few appts that have been a total waste of time. Push for a few weeks of zithromax if you can, from any doctor that will listen. It will get better, and you will get wonderful, thoughtful, compassionate advice from the parents on this board. Best wishes...

Just to back up the unreliability of titers: My dd's psychiatrist (knowledgeable on pandas) told me not to bother with them, as they are unreliable. DD did have positive culture (we were lucky, in that sense) in the absence of typical symptoms for strep. When we did take titers, weeks later, they were comfortably in the "normal" range. She was still in the midst of pretty high anxiety, ocd. Her neurologist seemed to think the "trending" of the titers were more important than the actual numbers. To me, it seems that would require my anxious 5 yr old to be stuck with a needle every three weeks- to prove what we already know. He also felt that strep (with the absence of pharyngitis) could be easily missed with a culture. There actually is a lot that they do not really know about strep. Many pediatricians seem to want to simplify it- it is not that easy.

My daughter improved immediately, about 50% on another antibiotic, a cephalosporin. This was after 4 weeks of extreme anxiety & OCD. She seemed stuck at that point, for about a month, with little or no more improvement. I took her to another neurologist and told him I wasn't happy with dd's progress. He suggested Zithromax. We did 10 days, with no change. He gave me 10 more days, and last week, around day 20, we saw another pretty big improvement. Still has some of the ocd issues to struggle with. Anxiety and appetite, and general happiness is much improved. It has been about 8 days, and I am hoping it lasts. We are going to switch to prophylactic Zithromax. Apparently the neurologist felt that if she was a carrier, or if the strep was resistant, or intracellular, Zithromax would help. I guess it did? I certainly think it is worth a try for 20 - 30 days, I would go from doctor to doctor, untill you could get it. It is impossible to watch these kids suffer.

I have been following this thread, because soon my pandas dd will start prophylactic antibiotics. She has been on amox, cephalosporin and now zithromax at full strength. She is doing better (not 100%). Her neurologist is planning on putting her on prophylactic zithromax (I think he mentioned something about it being easier on her stomach since it will be taken a few times a week). I am of course nervous about this, but more worried about strep or another pandas episode more. Does anyone on the forum do prophylactic zithromax? Any thoughts? Should I try amoxicillin first?

to follow up on what I just said: It looks like I might have an answer. My insurance co just emailed me a list of criteria for admission to pandas/pitands treatment (I am hoping they mean IVIG- what else is there?) One of the criteria is measurable clinical improvement after steroid burst. I guess that will be our next step if things get worse again....

Hi EA mom, We have seen Dr Latimer, and she was great, very compassionate. She does refer pandas patients to IVIG, and PEX. Did you do the steroid burst? My dd has had a really good 4 days, I am trying not to get my hopes up. If this continues we will just do a wait and see for now. (However the poor kid still can only wear one outfit, and avoids using the bathroom...) If she has another episode, or this gets even a little worse, I would like to do IVIG for her. I can't decide whether to do the steroid burst first- I guess it is helpful. I hope you are able to get IVIG locally, and I hope it helps!! Keep us posted...

IMHO there is a difference between a doctor and a scientist. If you are lucky, your doctor is both. I have found that the typical doctor cannot and does not think outside of the box. They read studies and statistics, but they don't commonly question them, or dig deeper. If your doctor is truly a scientist, then he/she will not take everything at face value. The doctor that thinks he knows everything is the most dangerous. Unfortunately we all learn more and more, that our medical system is completely controlled by the drug companies. They fund the studies and educate the doctors. I assume antibiotics are relatively inexpensive in comparison to these psychiatric drugs. Some doctors are happy to sentence kids to a lifetime of psychiatric drugs and therapy, to me that is as risky (or more) than other possible treatments. I know I am preaching to the choir. I just had to vent. sorry

do you know if this patient had PEX or IVIG? I don't think she did. Although I really like this neurologist, he seems to reserve IVIG and PEX for only EXTREMELY serious cases- I think it has to do a little with insurance though. I would certainly chose IVIG for my daughter if it could avoid a lifetime of dealing with this stuff. do we know if these teens had strep since being off abs? I do not know if they have had strep, but I know at least one doesn't have her tonsils, which IMHO may help later in life to avoid a couple of strep infections?? I am planning a tonsillectimy for my dd this summer...poor kid. I wonder how this boy will do into adulthood...do you know if he is on prophylactic abs or just psych. meds? He has been on antibiotics and psych meds (several different ones over the years) since he was young... According to Dr. K, IVIG "cures" PANDAS. I haven't figured out why we haven't gotten 100% cure rate from those on this forum that have done IVIG. I believe Dr. K's cure rate is 80% with 1 IVIG...and the other 20% theorectically could be fixed with a 2nd. I know worried dad's son and PMoreno's dd aren't back to normal...I don't know if there was some other comfounding factor. Certainly Worried Dad's son was a bit older and severely affected, perhaps an atypical PANDAS case (a PANDAS/SC combo?). I sure would be curious to see how either child would do with a 2nd IVIG (or PEX) and/or a 2mo. trial of Azith. (at therapeutic doses, if they haven't done that yet)... I am starting to feel that IVIG might be more of an effective treatment, than a cure. I still think that would be worthwhile. I am hoping to do IVIG if we have another episode (although still hoping for complete recovery from first). EAmom: have you done IVIG? Have you been able to acess what (numbers, statistics) the "risk" is?

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