thereishope

Some may find that therapy is hard to start until the antibiotics start to work. When PANDAs kids are in a midst of a full blown exacerbation, many cannot reason and they really are not themselves. You can just sense how they are trapped and it's just blank. If you decide to see out a therapist, maybe try researching a psychologist or therapist before a psychiatrist. Try to interview them prior to your first visit, see if they are familiar with PANDAS and get an overall feel for them. I weeded out tons of therapists with a simple 5 minutes phone call. For my then 5 year old son, CBT did not work, but instead a form of ERP did work for residual OCD. Even now, I know if I ever start to see anything creeping up again, I will have "tools" I can refer to and that will hopefully help. Here is a link to some useful books too... http://www.latitudes.org/forums/index.php?showtopic=6616&st=0&p=52242&hl=chansky&fromsearch=1entry52242

I wish I had a magic answer for you. I am the stay at home mom of my 3 kids and my son's PANDAS exacerbations were all encompasing to me. Looking back, it is an out of life experience and I have no idea how I did it. All I can suggest is to make a decision on what you want to share with co-workers. If you keep it to yourself, at least work becomes a place where you can at least pretend life is somewhat normal. If you are open to everyone that your son has an autoimmune disorder affecting his brain yet assure them you are still devoted to your job, you will at least have a few understanding people to vent to at work if the previous night was a bad one. If you feel you will require leaving work early and taking loads of vacation time, maybe open up to a selected few. When you are at home, realize that you are only human. You have your family, a job, and even though friends and extended family are necessary sometimes, don't run yourself thin by committing yourself to long phone calls, visits, etc. Try to leave some time for yourself, even if it just means sitting on the couch after the kdis are asleep staring at the wall. Sometimes that quiet is gold.

This is only day 2 of taking the Zithromax.

Saying this makes me feel old...my son was diagnosed before the Cunningham test was really talked about so he has not had a need to get it done. Granted that was only 2 years ago, but still. My son is pretty textbook PANDAS so he wasn't a hard one to diagnose. He was sudden onset on his 5th bday and even though he does not get symptoms of strep (none of my kids do), I had read about PANDAS prior to my son's 5 year check up and told the dr he had a sore throat even though he didn't. She did a strep test. The rapid came back neg, the culture was + and he has improved with antibiotics and time. All together, we have had 3 strep triggered exacerbations. With the subsequent two, I knew to take him for a strep test by recognizing his hallmark meltdown he will have once PANDAS begins to surface.

What time does your son get home from school? My son is taking Zith and Augmentin for a bad sinus infection. This is our med scedule Morning (around 8am) Augmentin and vitamins 4pm Pearl probiotic 6pm Zithromax 8pm Augmentin and allergy med The probiotic will ideally be spaced out 2-3 hours from an antibiotic. The pharmacist said at least one hour between the Zith and the Augmentin. I go for 2 to make myself feel better.

Yes, in hindsight I see that. Unfortunately, for us since the fever was for one day and no sore throat, we never suspected strep. Again, oddly that was the only time he even had the one day fever from strep. In all subsequent strep infections he had no fever at all. I say my son doesn't get symptoms of strep except for his PANDAS behaviors. For him, PANDAS is his symptom of strep.

With my son's first PANDAS exacerbation, the PANDAS symptoms (OCD, meltdowns, etc) surfaced a few days prior to a one day 102.6 fever. That one day fever did not occur in subsequent strep triggered exacerbations. Ah, yes! But when the delirium comes well in ADVANCE of the fever?!?! I've seen people out of their minds in the midst of a high fever, but I've never seen it before the fever itself shows up.

You can also give your child a probiotic to keep the good bacteria in the gut and avoid yeast issues. Space it out 2-3 hours from taking the antibiotic.

That happened to my first son when he was a baby. It won't last forever. Poor Danny!

I missed which daughter it was too. Sorry! My 2 non-PANDAS kids still have their tonsils and I don't plan on removing them unless strep becomes a problem with them. They've each had strep once. But, I fully understand why you'd consider doing it. Do what you think is best. The younger they are when they have them removed, they are suppose to heal faster. Good luck with the surgery!

If your friend's child developed tics and OCD or it worsened post surgery, definitely have them look into PANDAS!

Do you want stories of children who have seen an OT or just examples of what a PANDAS child experienced that the parent believes an OT could have seen at some point? When my son was in his exacerbation, he had to screened by an OT (per request of his SLP) for his sensory and OCD but all paperwork on questionnaires had to be filled out how he acted prior to the exacerbation so he didn't qualify. If I had been directed to fill it out with what he was experiencing at the time, it would have been a different outcome. In hindsight, I should have asked to fill out that questionnaire twice for my own records.

Then there's my kids, they do not get symptoms of strep but they will test +...and they are not carriers.

So...you didn't have the best vacation? I am so sorry this happened. I'm glad she is okay overall from tha fall. Did her PANDAS symptoms ramp up after that? As for the t and a, I can just give my opinion...and it's only an opinion. I'd wait to do that until you feel the majority of the resurfaced PANDAS symptoms are gone and gone for more than just a couple days. Not all, but some on here have experienced PANDAS symptoms post surgery and you don't want the perfect foundation there for that to happen. Have you discussed with Dr K about having a steroid burst readily available post surgery in the event anything happens?

I just want to add that some PANDAS kids are completely fine eating yogurt. I don't want anyone who reads this statement to go into panic mode. If you are concerned, take it out of the diet for awhile and see if there is any difference in your child. As with everything, every child is different.

You don't have to be established at an office for a visit. As for the adults, if you have to just pick a dr from your insurance (if you have insurance)and when you call say you need an appt for a strep test and you think you have strep. You can explain it in more detail when you see the dr in person. Or look into grocery stores,Walgreens, etc thathave "Little Clinic" or "Minute Clinic". You can get strep tests there. As for other kids, are they established with a pediatrician? If not, again, you don't have to have any files transfered to become a new patient at an office and get a strep test.

Don't know if this thread would help at all http://www.latitudes.org/forums/index.php?showtopic=5073&st=0&p=35547&hl=encephalitis&fromsearch=1entry35547

Motrin and Advil are just name brand Ibuprofen. Some may have dye in them. My son won't swallow pills so we take dye free generic ever since that last recall. The other NSAID that is not Ibuprofen is Aleve (which is naproxen sodium). Those who have tried that have said that it did not work as well as Ibuprofen.

There are at least 2 I can think of off hand. One does get her their daughter's bloodwork checked on a regular basis. Like I said, I, personally, only give it short term, as does the majority on here.. The longest was one time I think I gave it for two weeks or shortly less. I started every 6 hours for a couple days (with a break while sleeping), but then spread it out more, like only one or two doses a day. Total was two weeks or slightly less. Now, if I would see anything questionable now, I will give a single dose as a precaution until I can asses him more. I haven't had to give him any Ibuprofen for a really long time now. I'd suggest only short term to anyone since there are too many things you'd have to look into with anything longer. Vickie--Are some on the forum on daily Motrin long-term? I have not seen that written anywhere, I have only ever seen Motrin use referred to as a "bandaid" approach short-term for a day or two?

I thought the new mental health bill says that mental health has to be covered the same as "regular health". I didn't think you'd need separate mental health coverage. Have you spoken to billing at the hospital instead of the neurologist? That's ridiculous he won't change it.

Well, even if it is allergies, those can cause sinus infections as well as they have doen in my two sons. Have you gotten him checked out for a sinus infection? Some on here have only found the sinus infection through MRI's. Sinus infections can be very hard to clear and need more than a single 20 day script. My kids have gotten the script for antibiotics and an allergy spray to open up the pasages for draining. It's an allergy spray which has steroids in it, but I only use it for the first week...not continous for a month or more like the dr suggests.

My son is 6. I follow the label for dosing on the dye free liquid. If you unsure of dosing , check the Motrin website or even look at a liquid bottle (even if your child takes pills). I believe you can give full dose short term. I never really went passed 2 weeks and never woke up him up from sleep to give it. Some on here have given it long term, but lower the dosing and some may even get the liver checked. Again, I, personally, have only given it short term. Ibuprofen shouldn't be given when the child is on a steroid and you can give milk prior to it to help the stomach.

Motrin is Ibuprofen which is a NSAID (Non Steroidal Anti Inflammatory Drug) From the PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266 "Q:I've read a lot about Ibuprofen, what can it do for my child? A: Many parents report anecdotally that Ibuprofen (e.g., Advil, Motrin) seems to lessen symptoms. The exact reason is not known. Several recent papers indicate that this could be caused by reduced inflammation of the blood-brain barrier and thereby preventing the anti-neuronal antibodies from reaching neuronal tissue. For those interested in how T-cells cross the blood brain barrier and the effect of ibuprofen on ICAM-1 adhesion modules see http://www.latitudes.org/forums/index.php?...art=#entry46222 " If Ibuprofen helps your child PANDAS symptoms, it can be take as an indicator that inflammation may be occuring, which is what happens with PANDAS. Now, if Ibuprofen(IB) does not help, it does not rule out a PANDAS possibility. In my child, IB did not help one time, but helped in a different exacerbation.

Was it Alyssa?

Yeah!!!!!! as for Cucke E Cheese....I admit we still go there maybe 2-3 times a year. I just make sure they use hand wipes the second we leave:) McDonald's play land...never again. That place is so filthy. I can just imagive the strep bacteria lingering in those crawling tunnels and stuff!