greenmommy

I guess my question -- is if you have PANDAS - an autoimmune condition - can the auto immune manifest in other ways? http://rarediseases.about.com/cs/iganephropathy/a/042002.htm

Has anyone's child ever had blood in urine (a significant amount - you can see) following a PANDAS episode? This is the 2nd time it has happened? Thanks.

My son now has red blood cells in urine? Anyone else have this?

My son now has blood in his urine. Anyone ever have this?? Red blood cells in urine. Have to go for ultrasound tomorrow.

Unfortunately, we have been dealing with this for almost 5 years. He gets strep...will get like he is now...then we do 5 days prednisone and then 14-21 days of antibiotics. Usually by day 3 on steroids he makes a huge recovery. Hoping to see that today. Saw the tick this morning already. So should I ask to change antibiotics? We have gone to Dr Latimer for the last couple of years but having such a hard time getting appts - she is wonderful but we live in Atlanta. Scheduled with Dr Murphy for January but still waiting to get the call back - I could drive there.

My son is in the thick of it now. Had a horrible eye tick - went away with steroids/augmentin. OCD continued...anger...rage... Another round of steroids/augmentin. Day 4 of steroids and finishing augmentin - eye tick shows itself again! I think the infection has cleared but the inflamation is there. Have appt with Dr Latimer in end of January. He is on zinc, fish oil, augmentin, prednisone, multi-vitamin, probiotic, evening primrose oil, goldenseal, wheatgrass shots, gaba. Any ideas? He seemed better today and then he lost it tonight and then I saw the tick. He has missed school all week.

My son was diagnosed with PANDAS 5 years ago. We have been through all sorts of battles with this horrible condition! He has been great for about 11 months. He is on penicillin, probiotic, nordic naturals fish oil, D, golden seal, multivitamin. He currently does not have strep. He started with a eye tick about a month ago. His glands are huge. He has horrible seasonal allergies - spring and fall and sometimes summer. I am convinced that his body has a flare up of PANDAS symptoms when he is fighting allergens. I took him off gluten, dairy and sugars. Hoping to get under control. Back on Andrew Weil Anti-inflamatory diet. Anyone else see this? Who is on allergy shots? How else could I boost his immune system? Thanks for your replies. What would we do without each other? Alicia

With the last round of PANDAS last summer - my son did have blurred vision.

Mine is allergic to seasonal...majorly. Been coughing since October 09. Also nuts and peanuts. I always have new theories to why he has PANDAS and I am thinking about allergies so much right now...

Didn't we have a list of dr's that help with PANDAS kids somewhere? I can't find it now...

I am in GA too. Interesting - he has horrible spring allergies and I just started the allergy medicine 2 days ago too...

So it is March. My son says he has a sore throat last week. He has a weird "territorial" play date with his best friend. He had a bad day at school - could not play with friends - super weird when he is normal. Now he can't stop clearing his throat. Same tick he had when he had PANDAS the first time. He clears it like every 3 minutes or more. After we kicked this last summer - he has been 100% normal - awesome! Fun, happy -- a joker! No worries at all and just awesome. So scared. Will call Dr Latimer tomorrow and see what to do. His glands are super swollen! I hate this so much.

My son is on penicillin. A

WOW! The book was great. Things she wrote in there that I had actually said word for word...like this is not ocd it is something else... I love the idea of a conference.... Alicia

We saw Dr Latimer this week. Was it ever worth it!!! Can not describe how great it was to talk to a doctor who knows PANDAS and treats children with PANDAS. She reviewed all the records I brought in. Did a detailed exam. Very good!!! So worth it. Do it if you can!!! You won't believe it. My son told me thanks for taking me there mom. Alicia

I was at a conference last week and she spoke about this. I guess a lot of kids that are on the autism spectrum go for carbs. She spoke about when you are in extreme stress - you will not want to eat anything but when you calm down from the stress you will crave carbs. She said the problem now days is most people are under stress all the time - especially kids that are sick.

http://www.cdc.gov/H1N1flu/vaccination/pregnant_qa.htm

We are going to see Dr Latimer on Thursday!

http://www.kellydorfman.com/ I went to a conference on Friday to hear Kelly Dorfman. She brought up PANDAS 3 times in a group of 300 therapists, etc. She is great. If she ever comes to your area - go!!! Alicia

So it was 3 days off the antibiotics and the anger is back (he had only been on the keflex for 20 days - ended sunday). He punched his milk this morning because he wanted a different cup...yelled at us...hyperactive...asked reassurance questions today. I called the pediatrician and asked for some more keflex - she had said no on monday. She said okay - 10 days - we see Dr Latimer on the 17th. Will stretch it to last until then... She said no more antibiotics until we meet with Dr Latimer and there is a clear treatment plan. So thankful she gave us 10 more days...hopefully he will get better quick. He told me PANDAS was back but not as bad as last time - just kills me. I love him so much - I just want my sweet little boy back. A

Congrats! May it continue!

I am so sorry.

Yes - we had normal titers with my son this time...last time (2 years ago) they were raised but not this time...started me on the wrong path of what was going on with my son...but 1 month later I revisited the PANDAS stuff - 4 days of steriods and antibiotics - 85% better A

We are scheduled to see Dr Latimer on the 17th. Got plane tickets today. So tired of trying to educate drs ... want someone that knows what is going on. Will write after our appt. Heres hoping my son will be ok of the antibiotics until then. Pediatrician will no longer prescribe but sad she will work with whatever Dr Latimer says. A

Sorry if this is a bad question... Do DAN doctors help with PANDAS patients?