dcmom

I am sorry for what you are going through- this is just my opinion, but if you are having 10 positive streps per year, it sounds to me like your dd is just not clearing. Possibly the strep is always there, sometimes showing up on the swab- sometimes the swab missing it. I mean, ten times is just not "normal" outside of our pandas kids. Maybe you could consider doubling the antibiotics for some time? and maybe consider ivig?

Hi Debbie- thanks for the update! As you may remember, my supposedly non-pandas daughter has been having stomach aches and anxiety since she had strep with her sister in February. For some time we thought it might be emotional reaction to stress of sister being sick (still could be). We did lots of GI testing, but did stop short of endoscopy (GI didn't think it was needed). We have started to treat her for a possible pandas variant, and did have her cam kinase done. I can completely understand your hesitance on getting the cam kinase done. Unfortunately, at this point it is not a conclusive test. I have tried hard to limit testing to things that will affect my kids treatment options. Therefore, if treating as pandas- until you are ready to go forward to pex or ivig, having the test done may really not affect your solutions. $400 is a lot for a family with increasing medical bills. The cam kinase test was a big help for my younger dd- she was 161 (I think)- which helped us get pex, which is what we wanted. It was not that much of a help in figuring the other dd out. Her cam kinase was 106 (I think) which is in the normal range, her other numbers were elevated, however. So in the end, it was relatively inconclusive- both Dr C and Dr L thinking it could go either way. She has been on 2 mos of full strenghth zith and is currently tapering from a steroid burst. Hard to say. I would say she seems happier, more compliant, less argumentative, slightly less anxious, and the stomach- while still bothersome, may be winding down a bit (although she would say no- could be placebo affect on me ) Anyway- just thought I would share. Please keep me posted.

Hi Family of 4- I have two dd's. One is clearly pandas, the other questionable. We have allergy issues with the non pandas (?) dd. If you haven't, the first step is to see an allergist. We did to get a listing on preferred antibiotics, and directives to doctors on how to treat with them. Some rash-type reactions can be side affects, and not life threatening allergies. Zithromax is actually the antibiotic of choice for many on this board. It has the ability to get intracellular, and may have some immune modulating effects. During first episode, pandas dd improved to about 90% after 20 days of full strenght zithromax. Both of my girls are currently on daily treatment dose. Steroids have been very beneficial to pandas dd, as well.

Thank you Dr T- I wish you success in your practice- we need you to stay afloat- so please do what you must! Unfortunately it isn't your fault (or Dr L's) that you both are overwhelmed with pandas kids- it is the fault of all the other neurologists and immunologists who continue to refuse to help families struggling with this. Please keep up the good work, and have a Happy Holiday! Will be seeing you again soon!

That is great news Melanie. Who will do the IVIG?

Stephanie- My dd did a steroid burst (3 weeks: one week treatment, two weeks tapering) over a month ago at the start of a post H1N1 exacerbation. The steroids stopped the exacerbation from spiraling down at the first dose, after the fourth dose she was doing about 90% better. She is holding steady right now. I know Tmom had had great success with her dd doing antibiotics and two steroid bursts over a year. Our current plan is to continue with antibiotics and use the steroids if she has another episode. She has some low level issues now, but for the most part is doing really great. I would go for it....

My ped initially told me "positive reinforcement" That's when I dropped them and ran to the experts....

tatoomom- my pandas dd had H1N1 this fall, we gave her Tamiflu. While the tamiflu certainly stopped the flu in its tracks, it didn't stop the pandas episode cause by H1n1. Several other kids on this board also had episodes post H1N1. DD started a steroid burst a few days into the episode, and is now doing really well...

What type of sleeping disorder? For my dd pandas caused lots of sleeping issues: difficulty getting to sleep, difficulty staying asleep, bad dreams, waking up not rested. When the pandas went into remission, she started sleeping peacefully again. My other dd had sleep apnea caused by enlarged tonsils- went back to peaceful sleeping post T&A.

Some doctors, and many parents have made clinical observations that certain antibiotics may be immune modulating.

This is a tough one. One thought- my pandas dd always does better on the weekends. She more rested, and has more time to do stuff- this is also when dh is home. Could this be part of the reason she is better? My dd also holds it together much better at school- where she will sit there silent and miserable, and then let it out to me when she comes home. I guess to her, I am the only one who understands... I tend to prefer to believe my kids when they say something, I know some have mentioned to me that maybe non pandas dd is making up her stomach aches- but I know this isn't true. Try to be compassionate and kind, but maybe for a few days ignore as much as you can the complaints of pain. Try to switch it up and distract her if she starts complaing- say Oh let's go do this (something fun). Observe her, I think you will figure it out- you just need more time to see if/what pattern there might be...

Tracey- The other thing I can say is- I have gotten really picky about blood draws. I try to do as few as possible, and refuse some (like if they ask for ASO and antiBnase). I am not interested (at this point) in experimenting, or searching for info- only getting blood draws that will affect the course of treatment. My dd was stuck so many times throughout pex procedure- she is now getting about a 6 mos break. I do want to get her to an immunologist who will do a more exhaustive panel, but until we are thinking we want to proceed with IVIG- I am waiting on the blood draw. Really, you should be able to get everything done in 2 draws (I would think). It is so hard- but I also think to myself: it is 10-15 minutes- they will forget about it. Hang in there...

Do you use emla creme? It is a numbing creme prescribed by doc for blood draws. Although it helps my dd, she still panics and yells a bit

Angela, I agree with momofgirls. Both of my girls have tolerated the steroids really well. For pandas dd it stopped two of her episodes within 3-4 doses. I think it would be worth a shot. See if he will give you 4 weeks (20mg/day for 7 days, 10 mg/day for 7 days, and then 5 mg/day every other day for 14 days).

Hi Angela, Sorry things have been bad- you and dd are due a break! So she is now on augmentin AND zith? Can you discuss Dr T's thoughts on this- sounds interesting....

Trg girl- It sure sounds like pandas I am going to be rather blunt, but only because I care and know the suffering that pandas brings upon a whole family. At minimum, your daughter needs a long term (minumum 30+) days of daily antibiotic. Maybe the amox didn't do the job, so I would probably try zithromax (it gets at intracellular strep, and might be a bit easier on the tummy). After this you will probably need prophylactic antibiotics long term (though many of us find our kids need full strength for a lot longer). You will probably want to consider a month long steroid burst. Since she is on the milder side, hopefully you will not have the need for IVIG or PEX. But, it might be wise to learn about these procedures and start down a path where you can have access to them if ever needed. If you don't think your doctor is going to be there for you for all this, you need to consider the possibility of traveling to DC or Chicago to get her the proper treatment. My personal opinion is that when your child and family are suffering, the heck with educating doctors....get treatment, then go back and educate your local docs. I am thinking there are some parents on the forum from Texas- maybe they will respond with a better doc... good luck...

Debbie- Ditto with my non pandas dd. She is more emotional, anxious and has daily stomach aches. This is all since strep, before that she was a self confident happy kid She has been on daily zithromax for a month, and has just started a steroid burst. I will keep you posted. PLEASE let me know if you figure anything out. (We also did the GI route, and eliminated dairy for a month- no help AT ALL)....

Buster- Are you planning to put this as a sticky on the top? Maybe with a note All new parents please read!! There is so much great info there, and so many new families....

Trg girl- I am sorry you are here, I know this is all so confusing. I will give you a few thoughts: I am not sure by what you are saying that you are at a great doc for pandas. There really are only a few that have a real understanding. Where do you live? I am NOT a big fan of strep titers (ASO or Anti Dnase). All they can possibly indicate is that your child has had a strep infection- but they are not accurate at that. Many kids get strep w/o high titers. IMHO it is not necessary to get them done, esp if blood draws are an issue- it also is a slippery slope, most docs that want the titers want to track them, this means multiple draws. My own daughter, clearly pandas, had normal strep titers a month after a positive culture and clear cut pandas onset. Dr Cunningham's office is closed until the new year. You will not be able to do the blood draw until then, at that point you can email them for a kit and have the draw done at your doctor or lab. Ask the doc to prescribe emla cream (which is a numbing creme applied to point of blood draw)- this really helped my dd. If you suspect pandas, your first step is to get on a long term, full dose antibiotic. My suggestion is zithromax (daily), although some use augmentin. Be prepared to wait, it took my dd about 30 days to see an improvement. (BTW improvement with academic issues took a lot longer) After about 30 days on abx, it would most likely be appropriate to try a month long steroid "burst" (of course stay on the abx). This can help to jumpstart healing for some. I would not even consider a psychiatrist, and definately not psych meds, until you have gone through these steps. All the best...

We do the same as pixiesmommy with the liquid zithromax. I get a month at a time, and mix as needed. It is important to ask the doc to write for a month prescription, because then you only have one co pay a month....

My daughter has tolerated the steroids well. It has taken her at least four days to improve. I believe for some the improvement has taken longer... Hang in there!

Right now I give dd probiotics at breakfast (alternate btween culturelle and florastor), and her antibiotic (zithromax) at dinner. Is there any reason I should reverse this? All is well right now, so I hate to change anything, but I was just thinking that I randomly selected this schedule...

Hi Buster, I have been meaning to reply to you. Not sure if this will be helpful... My dd Julia was hit with pandas at age 5 in the middle of Kindergarten. It was very hard to tell how it impacted her academically. I didn't see a big difference in her drawing or handwriting, so I thought everything was her "normal". She was not a really confident student, struggled a bit with writing letters backwards, really had a tough time remembering and writing numbers, could not remember days of the week in order no matter how much we tried, and was somewhat resistant to doing homework. She did fine (if ever so slightly behind on her standardized testing). She is young- ish for her grade- I just figured this was her. Fast forward to literally the week after pex: she can recite the days of the week everytime, no problem, she can write her numbers 1-100+ no problem, she sits down by her choice and reads to my mom for an hour, she does 10 pages of her make up homework with NO help or coaching, and then she tests advanced in math. So in other words- these academic issues were not her, they were pandas. All of this info she did learn, somehow, but she just couldn't get it out I guess. We haven't done an IEP, yet. Thinking about it due to so many absences. My dd also hates being pulled out for anything- which is not helpful in the anxiety dept. So, I just wanted to give you the hope that within time as the pandas resolve, these issues may as well. I forget how old she is, but possibly you could just get them to really take it easy on her this year, and you can supplement yourselves or with a tutor in the summer. It has been easy (in a way) for us, since dd is so young. All my best...

My daughter had a full blown pandas relapse post T&A. We used a month long steroid burst, and (at this point) permanent daily antibiotics (zithromax) to get her out of it. Unfortunately, you need to get to a Dr who is knowledgeable and willing to treat pandas. Where do you live?

I don't mean this to sound unhelpful- but the best things we have done have been seeking out doctors who are strong believers of pandas. We didn't want to waste time educating or fighting with docs. Going to Dr L and Dr T were the best decisions we have made. Now that we are actively treating and learning about pandas, I am educating her pediatrician group, and whatever doctor we see. It is sometimes easier to educate them when you have already seen beneficial results. Just a thought... I wanted to let parents know that if they have the ability to get to one of these docs- that should be your starting place, then when treating your child, go back to your local docs to see if you can pull them along....