dcmom

It might be time for one of those blow up indoor trampoline things. I was thinking of getting a real tramp for the backyard next summer (my kids are older). I think exercise and fun is so helpful to pandas, and jumping is excellent. If you don't have one, and get a new one, she will probably use is a lot for a few weeks.

I am sure others will chime in. I am thinking, this is not the time to beat yourself up about her diet, or to make changes for her. My dd is extremely thin, and eats like a bird. During the steroids, we were on vacation. She was hungry all of the time, and ate more at one meal than she normally would during the entire day. At this point I would do my best to offer her healthy, high fiber (filling) stuff- but would not stress either of you out on it. If she gains a few pounds, so be it. Maybe you can try keeping her a bit more active, as well. Once the steroids, and pandas episode are over- then I would tackle her diet- one item at a time. My pandas dd also used to love all dairy. I used to (with the doctors aggreement) limit her daily intake to the recommended amount, and of course it would all be low fat. Some healthy meals/snacks: apple with peanut butter, homemade muffins (low fat with agave syrup instead of sugar), whole wheat pasta, raw veggies and baked chips with salsa, whole wheat pasta, etc. Sometimes if they help in the preparing of foods, they are more likely to eat it as well. There is a really cute blog (I have to search and find it) where the mom makes all meals look like a cute smiley face. She uses extremely healthy food- but really cute presentation.

I agree withbx EA Mom. We are from NJ and live in DC. We see Dr Latimer regularly, and are scheduled for pex. Insurance is covering it! She also will do IVIG, abx, and steroids (all tailored to your case). We have also seen Dr Trifiletti in NJ. He is very knowledgeable and experienced with pandas (has a 21 yr old patient he has been treating since she was really young). He will def do abx and steroids, now that he is in his own practice, maybe he would do pex or ivig (at Columbia, or maybe Georgetown?). Both doctors are extremely compassionate. There is also a well regarded DAN Dr in Stockton, NJ Dr Stuart Freedenfeld, who told me he treats many pandas patients. Then of course Saving Sammy's Dr Nicolaides. If you are in the NY/PA/DC area you are actually better off than most!

Okay. So dd has been really doing well the last few weeks. I have known it is all simmering below the surface, though. Over the weekend she came down with a stomach bug (low fever, diarrhea). I kept her home yestarday to rest, she was totally energetic and probably in the best mood I have seen her. Today she went back to school. This morning was a little harder than it has been, and this afternoon she had a pandas-like fit. I am distressed. Hopefully, this is a little blip, and she will be better tomorrow. When your kids have an illness. what types of patterns have you seen (how long does the uptick in pandas last)? Is there anything I can do (to prevent a relapse)? Should I have her cultured (I really don't think its strep- her sister had the same bug)? She is on 200mg/day zithromax. Thank you!

Faith- unfortunately this info is not out there for parents to find. The word needs to get out, not only to parents, but to teachers, school psychologists, guidance counselors, parents, grandparents, and anyone who may be involved in children's lives. We have the info, but I shudder to think how many kids are currently suffering undiagnosed. Since the medical community is not being helpful, we need parents to be armed with the information to walk into doctors offices and demand treatment. Go Beth!

peg- A neurologist did mention to me once that bad cases of pandas rec'd both pex and ivig. It makes total sense to me. We are going to pex, and I have been thinking about this a lot lately... My daughter doesn't seem to have an immune def. With your daughter's case, I think it would make complete sense...

Hi power of prayer- My daughter has no tics, but ocd- so I can't help there. I think there may be another family or two that present with mostly tics. If your dd has high cam kinase and tics- I would, of course agree, pandas. I think it certainly couldn't hurt to do the following: a month of daily antibiotics along with a month of steroids. If you get a response, then you really know you are dealing with pandas, which would help you with further treatment. It definately seems to be somewhat of a spectrum- some kids get lots of symptoms and are totally debilitated, others present mildly. Some other symptoms of pandas that can be more subtle: urinary frequency, excessive wiping after urinating, difficulty with academics (math, writing, reading), bad dreams, difficulty sleeping, picky eating, sensory issues (socks, clothes, sunlight, noise, etc), avoidance of personal hygeine (bathing, brushing teeth, hair brushing), particular with place ment of belongings, short fuse, separation anxiety (can be mild). I am sure others will add more. Hoping you find answers...

It is such a hard decision, but, isn't your mommy instinct always about 95%? Could you homeschool through December, and then re-evaluate if things seem stable? I know at some point we have to send them out into the world, but hopefully not until they are healthy, isn't that the benefit of being a kid? How does he feel about homeschooling? My dd is scheduled for pex on Oct 20th. I keep extending the amount of time I will keep her out. She is in first grade- I can't imagine missing a month of school (I am only planning 2 weeks now, but will re evalute when that time is up) will matter to her socially or academically anywhere near what a relapse would mean. Hugs.

I guess I have, like all of us: PPPS (parental pandas stress syndrome). Anyone have a better name?

I am sorry- that must be so disappointing- school is so annoying sometimes- isn't it? (I mean on a different tangent- my dd did nothing challenging in school last year, except maybe learn some bad words from the other kids. At times I so resented the fact that I had to send her...) He could have been exposed to strep. My dd had a flare up of behavoirs while on steroids, when exposed to strep. It is helpful to ask the parents, teachers, nurse, principal to inform you when someone he has contact with is sick (esp strep)- at least you can make the connection. When my daughter has had a flare up because of exposure (3 times), it stopped a few days after the exposure ended. I hope he improves soon- keep us posted- will be thinking about you...

Hi Faith- We had non pandas cam kinase tested because since strep she has had stomachaches, and has been irritable. I chalked it up to the stress of pandas in the family. But, after reading some info on Dr K's site, I was concerned, so I had her tested. Cam Kinase: normal, haven't gotten other numbers yet. So, I am now convinced it is sensitive stomach (possibly out of whack from strep- it is improving), stress and looking for attention because of pandas sister, and the emergence of an almost-in-middle- school- tude (ugh!).... I was so relieved when the numbers were in the normal range. I will continue to keep a close eye on her, though.

I love that there are other people in the world that think about this stuff all day- like me I just want to chime in with my experience/opinion: In my mind it is a certain strain (or certain multiple strains) of strep that trigger pandas in a genetically succeptible host (this is what the docs say). I agree with this because: I have two girls: one pandas ocd, age 6, (cam kinase 161%), one non pandas , age 9, (109% cam kinase). Prior to pandas, each of them has had strep throat one or two times. Both times for both of them, they had "classic" symptoms: fever, sore throat, tired, etc. No behavoir issues at all. This was all before 2009. Then in 2009, pandas dd had an overnight onset (that continued downhill quickly) of urination issues, ocd, etc. We finally connected the dots, and got her tested for strep. She had a positive culture. Many children in her class contracted a similar strep (extremely low level, or not noticeable symptoms) that season. Two weeks later, non pandas daughter was a little tired one weekend. I panicked and had her cultured (never would have considered the doc for this before pandas). She also had strep! A couple of kids in her class also came down with a similar presenting strep. So, both my kids have had "normal" strep episodes prior to pandas hitting here. My non pandas daughter had the same strep, and presented with no symptoms this time as well, but (so far, thankfully) has not developed pandas. Of course once pandas is triggered- it's a mess...

Worried dad- I am interested in the Augmentin dosing. Can you tell me what your son is on- I saw in another post- but do you know is he at a treatment dose for his age/size, or is it higher? (my dd is little- 36lbs- so I am wondering what type of dose that would be) I hope you have the same results as Saving Sammy!

P.Mom- I don't want to inundate them with calls, as we are pursuing pex. I am however interested in what kind of dosing they are testing. I assume they will have a control group on prophylactic abx, and then a test group on a high dose augmentin. If you find anything out, please post...

Worried Dad- that is great news!! and so interesting. There are quite a few kids on here that do continual antibiotics at a higher than prophylactic dose. I, also, have been wondering how/why this works. I thought the same thing when I read Buster's post- maybe some of our kids have chronic strep- and the antibiotics are just keeping it weak.

Well- the lab (for some reason) changed the test from strep pneumonae titers to mycoplasma pneumonae (negative)! Everything else is perfect- all Igg, Igm, Iga, subclasses, tetanus, and many other numbers. I am hoping I can get them to draw blood for the strep pneumonae test at the hospital when we are there for pex. I imagine the pex won't affect those results. Shaes mom- do you have any info or studies that talk about low or failing strep pneum. titers in regard to immune problems? I am wondering what Dr Latimer thinks of this, and might like to head prepared with some type of paperwork. At the bottom of the report, someone noted "seems to have well functioning B cells". This is totally lost on me- anyone? thanks... Eileen

Was she in an exacerbation at the time of the blood draw? Had she been on steroids previous? (Someone else will be able to explain better than me- but I think this info may help...)

my daughter is ocd and mild chorea, not tics. that is strange- she didn't really even suggest ivig to us?? Are you coming to Gtown- or did she find someone local for you?

Char- I am sorry- that is so frustrating. Dr L is really compassionate- I am sure she will follow through. (I would continue to be a pest, though). I think she is really busy with pandas these days.... Where are you located- is there a possibility of a local doc- did you email Beth Mahoney?

[Debbie, Bronxmom 2- We had the same exact story here. My dd did really well on steroids. But, on the taper down (also exposed to strep) she had a flare in symptoms. It is at that point that we had a follow up with Dr Latimer. She decided to pursue pex for dd. ( We also had Cam Kinase results back at that appt of 161%) We also have been approved by insurance, and are scheduled for October 20th. My dd is actually doing pretty well right now (bracing for a setback post pex). Bronxmom- what made Dr L chose IVIG and not PEX for your child? Just curious? thanks Eileen

I am not questioning these theories, just trying to understand. I, of course, am all for immune testing to help with discovering possible underlying issues, and/or to help with insurance payment. I am just trying to understand the medical implications. So my question is, do we know if there is a relationship to failed pneumococcal titers, and an inability to fight GABHS? I understand there would be an inability to fight strep pneumonai- but that is different, correct? Are you thinking that your kids had strep pneumonai as a trigger for pandas, and not GABHS? PS: My dh just rec'd the rest of my daughter's immune results, so far everything looks normal- but he can't find pneumococcal titers! Are they called something else? Don't tell me this is the one test they didn't run! Can you tell me if they said pneumococcal titers on the report? He is going to fax it to me shortly... Thanks

SF mom- for my information: Strep pneumae is a different bacteria from GABS- correct? Where did you get the information that if those titers are low, the child cannot fight GABS? I thought pandas was a case of creating antibodies to strep that (for lack of a medical term) got confused and turned on oneself (autoimmune). Do you think that is not correct? or that I am just trying to understand...

She is doing really well right now. We started the process of scheduling pex when she was in a minor episode, and when we rec'd her Cam Kinase which was 161%. We do see glimpses of pandas stuff everyday, though, and I feel any little thing could put her into an exacerbation. We are trying to be very aggressive- she has lost 6 of the last 9 months to pandas. Also, I think it will be easier to get through the procedure when she is not in a full blown episode.

Buster, EAmom- Ok, so my daughter had her second pandas episode brought on by T&A in June. Right before the surgery she was almost 100%, on prophylactic zithromax. So my thought is it was caused by one of two things: either the sedation, or, stress on the body of surgery opened the blood brain barrier which allowed those bad antibodies that were still hanging out, to cross. Or, she had some strep in her throat and tonsils, that was only colonized and during surgery was introduced into bloodstream. She is getting pex in two weeks. If it was a breech of the blood brain barrier, then we are doing the right thing by removing antibodies. My only concern is- what if she has colonized strep? What is the process to clear that (if any)? I am going to keep her on 200mg/day zithromax untill pex- do you think that will help? Is that maybe why so many kids do well on full strenght antibiotics, and have trouble if you try to back them down? Maybe our kids are not benign carriers, but more have chronic strep? Any insight would be helpful.... Eileen

Look through the kit first. It contains stickers, two rolls of sticky medical tape, and bandaids. It also has some booklets and parent info.