momofgirls

Maybe a yeast rash? Our doc is not big on long term abx nut I have been pressing him regardless he mentioned that some people get a yeast rash from the antibiotics. I don't know what this looks like but have it checked out.

I want to encourage EVERY parent on this forum to seriously consider pandas for their child. I spent over a year thinking my daughter had TS and OCD. All her strep tests were negative and we recently started her on a high dose of augmentin and for the first time in over a year she is 99 % symptom free. We found an immunologist who believed our girl actually has pandas regardless of all the negative bloodwork. He was bold enough to start antibiotics and she is all better I am barely seeing a quiver in her lip. The bad thoughts and tics are gone. Be aware that it may take many weeks and even a steroid burst before seeing improvement. I saw no improvement for 3 wks and then dramatic improvement after. You can research a DR kovacevic in chicago. He is kind and answers emails. Also look up Madeleine cunningham at oklahoma university. She is a strep expert and doing a study on pandas. I know their lab is closing sometime for the holidays but you can participate in the study. I hope this helps some of you find the answers you need.

I just want to add that my daughter has been on 1200mg augmentin for six weeks now and is doing excellent. She only weighs 40 lbs. Her tics were pretty bad and had moderate OCD and she is almost symptom free. If you guys are not seeing results with other abx then push for the high dose augmentin.

Ok I think I need ivig now too! I wrote in my last post to tmom..."Who ARE doctor was" I meant to say "who our doctor is". Ok I won't post anymore tonight because I need sleep!

My previous post was directed to Tmom. I have not figured out this forum and posting correctly yet so my comment seemed out of the blue! Tmom you sent me a personal note right? That was suppose to be an answer to your question about who are doctor was. Sorry everyone else for seeming random.

I just want to add that my daughters cam k was only 137 and anti neuronal titers were all normal. Our doc prescribed 1200mg augmentin a day. At six weeks on this dose symptoms are almost gone. She had moderate tics and mild OCD.

Hi we live in connecticut and see dr bouboulis. He is an immunologist and is a very kind doctor just outside New York. Dr Latimer's prescription may be just fine for you but it seems from what I am reading, my daughter's dose is pretty high for her age and weight.

Your son has PANDAS as originally diagnosed. There is help and I wouldn't wait till April. could you find a doctor to prescribe antibiotics and not just for 10 days? My daughter who is 40 llbs started 1200mg of augmentin a day six weeks ago. I didn't see any improvement for almost three weeks and now she is 97 % recovered! We are pursing ivig as well. Don't panic, he will be ok you just need a doctor with PANDAS experience.

Hi Suzan Yes I would be interested in hearing your girls history if you don't mind sharing. My email is kim1031@comcast.net Someone said it may be the strain of strep rather than being genetic but I can't remember where I read that. I don't know if my daughter has tourettes or pandas because after the strep infection she just had a mild tic (cough). Nothing dramatic until last year and I don't think she even has had strep since then. I wish there was a definate test to know for sure! Kim Hi Kim, yes, both girls! I hear it can have a genetic componet. We had the Dr. Cunningham test done and my 8 yr old is solid mid range and almost 7 yr old is on the lower range. Their symptoms present themselves in very different ways. If you are interested, I can send you their history. If so, PM me your email address. I would be happy to share it with you. Younger dd - titers are not elevated and I've never seen them elevated. First strep infection before 12 months old. She's currently doing very well after a few years of doing very poorly. Older dd - just had titers checked and am waiting on the results. First strep infection around 16 months old. She's not doing well right now. I guess they are taking turns! They both have sensory processing disorder (much worse when they were younger). They are both gluten intolerant and possibly have Celiac. Susan

Thanks guys. I will contact dr leckman next week. At this point I am not sure if we are dealing with PANDAS or TS but hope he can help.

Good information. Thanks Here's what I know, which I admit is very little! Please anyone correct me if you see anything wrong! The strep at birth that they are worried about is Strep strain B. The strep that is tested in the throat is strain A. They are both strep but different strains. I was just tested positive as a carrier for strep B. Some docs say that strep B is not related to PANDAS, others say that all strep is related and it could affect the kids. Strep B is what you would usually find in the vagina but my kids are getting Strep A there. I guess you can get it anywhere..... They are cultured in the same way as the throat, with a swab. Not fun for a little girl for sure. It's often negative with the rapid so our ped only does the culture. I learned about it in January after my girls had a watery discharge for a few months that eventually turned into an infection looking discharge. Luckily we had a Ped who had seen it before. Susan

Vaginal strep?! My gosh this is getting more and more complicated. So is that something they check at a reg pediatricians office? Do they draw bood too? I am starting to wonder if mothers can be a carrier and pass it to a child during birth. I remember back when I was pregnant I tested positive as a strep carrier. During labor they administered antibiotics and said this was a common occurance and there would be no complications as long as I was treated. Has anyone heard of there being any link between this type of thing or am I diving off the deep end? Kim

Susan Both your girls have it? Is this genetic? I am concerned about my younger daughter now too who is not showing symptoms. How are your girls now and what are you doing for them? Have their titers been elevated all along? I know my daughter had strep a couple of years ago but her titers were normal. This year when I realized something serious was wrong I had her checked. I still don't know if she has PANDAS or TS/OCD. It sounds like a difficult thing to differentiate. Kim My girls did not have a dramatic onset because it started when they were around 1 or 1 1/2 years old. Now that they are older, I have seen some dramatic increase in symptoms that seem more like an "episode" that have helped us get diagnosed. But before this year, we've been dealing with strange symptoms or intense issues but nothing that seemed like a dramatic onset. If I had known about PANDAS 7 years ago, I MAY have been able to recognize what what happening, but I still to this day am unsure about that. Susan

I am very new to this but yes I think strep titer and some are talking about a study for the development for a specific pandas test through the university of oaklahoma. The dr's name is madeline cunningham. Other members will likely chime in with more information as I am just begining. Good luck!

Elizabeth I am curious what the doctors say as well. If I can get a consult with him I will pose the question as to any other possible causes of high cam kinaise. Kim

SF mom thanks for that detailed log. I know my daughter had strep a few years ago followed by a mysterious cough that lasted 6 months! After that she seemed fine until later the next year more tics. I am confused because she hasn't had strep since then. So I had her titers checked anyway and they were all negative. I don't know if we are dealing with ts or pandas. I am going to consult dr k that everyone keeps mentioning. I hope he can shed some light. Kim

Laurena82 Oh thanks for that response. It made me cry. Knowing there is hope is comforting. It just feels like such a long road. Kim Oh....more {{{{{{{hugs}}}}}}}}}} ...sigh.... I dealt with all of this ...eh....? 20 years ago..... ...sigh.... my son is 24 1/2 years old now....and NOT bothered by tourettes anymore...YEA! So....yes....it DOES (can ) get better.... bactk then, ...latitudes was barely a newsletter yet....I think it started out as an "alternative" treatment arm of tourette foundation....then they kinda/sorta didnt want much to do with it...and it became lattitudes newsletter......eventually a website..... after I was no longer involved. but...anyhow...my son had TS at pre school ages....I "realized" it/had it diagnosed at about age 7....spent from age 7 to 9 researching "alternative" treatments..... ages 9 to 11 doing them (supplements and food allergy avoidance) age 11 to 14 doing clonidine (catapres...it worked on motor but not vocal tics) age 11 to ? 13 with speech therapy for vocal tics/stuttering age 14? quit catpres ....and he was OK... TODAY....... age 24....no tics/no stuttering......a great kid/young man YES there is hope....... I'd like to help anyone I can here... It is SOOOOOO painful as a mom to see it all happening to your child....... ((((((((((((((((((((((((((((((HUGS!!)))))))))))))))))))))))))))))))))) to all!! !! !!

Well I am happy your daughter is doing better. So you have used antibiotics and steroids once. Is she a canidate for IVIG? If you continue with just antibiotics do children improve with that alone over time or is it just an ongoing battle forever?!

Elizabeth Iam new so I don't know how helpful I can be but you are saying that your daughter tested for pandas but does not have symptoms? Is there a genetic link to pandas? How strange that both of your children have tested high. I am sorry I cannot be more of help. I guess I would email that dr k and ask his oppinion. Good luck kim

Tmom, where are you in treatment? How are things now?

Buster the first strep was verified by throat culture and was treated. But her cough never went away which is why I now understand that it may have been a tic. Since then she hasn't had strep that I know of so I don't know if she could be a pandas kid or just tourettes/OCD. Her OCD was sever about a year after that strep infection. So we did not see it right away. She was paranoid of windows doors people bathrooms and it was really wierd but the prozac did help over a couple of weeks. She is no longer on prozac and her OCD is mild.

A huge thanks to everyone for responding. I am so overwhelmed and really appreciate you help especially since you all are struggling with you own children.

Thanks buster so much for replying. I will look into the test. Can you guys give me an idea of fees for this type of test?

Thanks dcmom I will look into the cunningham test. I live in connecticut. Our psychiatrist is willing to try the antibiotics but isn't very experienced with PANDAS. She said she could refer us to a dr in new haven at yale but he is not an MD. If she doesn't improve with the ten days on Keflex she would rule out PANDAS. Would you guys agree? Or could it take longer for improvement with antibiotics?

Thanks so much for your reply. I am desperate for help. Do PANDAS kids always have a dramatic onset? Her symptoms after strep were mild and I didn't think of anything like this. They seem to have progressed more slowly over time.