thereishope

Julie, if I give my PANDAS son Ibuprofen for symptoms, I think the longest I ever gave was for 2 weeks. I always give the minimum. There were times I gave it every 6 hours for a few days and then times I only had to give it once in the morning. I never gave it long term. There are natural alterative such as quercetin and Omega 3's have some anti-inflammtory properties. Here's this too... 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

My son did not have tics, but just wanted to say to only try things that you are comfortable with even if it's a PANDAS doctor recommending somethng. You're the parent, it's your child, you make the ultimate decision. Unfortunately, tics are sometimes one of the hardest symptoms to get rid of.

If I remember correctly, kids with Myco P can backslide with a steroid as well. I'm not sure on dosing, but hopefully someone else will tell you what their Zith dosing has been for an active infection. There are other kids who did better on other antibiotics than Zith. Yes, strep is not the only trigger for all kids. Many kids on here fall into the PITAND catagory where other things can trigger that reaction. I think the word "PANDAS" confuses basic doctors like pediatricians. However, I do not see this site as being fixated on strep as a sole trigger. Many just happen to have strep as the original known trigger that began their journey or seems to be the infection that causes the most distress. I don't recall parents saying strep is the sole possible trigger for all.

At least get the titers checked. Why vaccinate if he still has immunity.

I don't have experience with opting out yet since we haven't had the need for it but someone did tell me that if you are asked to sign anything, read it well. I guess in some dr offices, the sheet to sign says that you are not vaccinating and you know you are aware you are putting your child in harm's way. If it says that, write out that you choose not to vaccinate then sign after that or bring a print out of what you want to say ready for them to put in the file.

What state do you live in? CA? Here is a map of exemptions per state http://www.nvic.org/Vaccine-Laws/state-vaccine-requirements.aspx You could also get titers done for this. There's a chance your child is still immune.

I don't know. I was looking something up for a neighbor and stumbled on the Myco P thing. It said it's the same with pet rats (which is actually what I was looking up). I believe it did say your cat would show symptoms such as sneezing and perhaps it listed a yellowing of the eyes. I never had any pets either.

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Okay, we've talked about dogs and strep but how about cats and Myco P. I was looking something up and came across that cats can carry Mycoplasma and transfer it to humans when their fecal matter becomes dry and the bacteria becomes airborne. So, I suppose this leads me to ask those who have Myco P or persisting issues with an original trigger of Myco P is if they have a cat and if this has ever been suggested to you.

Unfortunately, a psychiatrist will probably just tell you to try therapy and offer you Zoloft or similar then charge you an arm and a leg. If you wish to get a referral to help with the OCD, get one to a psychologist or therapist. Even then, some kids will not really benefit from therapy until they are a bit more into recovery. That varies with each child. Otherwise, I'm glad you got a prescription for the Zithromax! Keep us updated!

He's had 3 strep triggered exacerbations. There's a couple reasons why the second may have took longer than the first. In the scheme of things it wasn't long after recovering from #1. I don't think his body or brain had enough time to "prepare" for it, if that makes sense. Also, I wonder if getting his kindergarten vaccinations could have made #2 worse. Not only did #2 take longer to recover from, but it was also more severe symptoms. Then forward to #3. That one wasn't as severe as #2, but he did now begin to react to other triggers which would set him back and keep him from making more progress. Also, in exacerbation #3, he experienced residual OCD. Most of the OCD shed on its own as it did in #1 and #2, but not of it went away that time. We did our own ERP under the supervision of a therapist and I didn't consider him in full remission until all the residual OCD was gone. Vickie do you know why each exacerbation takes longer to recover from by chance?

Welcome. Being that you're in Indy, you could just drive to see Dr K who is outside Chicago. But, this leads me to ask the forum if Dr K is automatically going to IVIG for everyone now or if he will still try antibiotics and such first. I found these doctors listed for IN, but these doctors are NOT specialists. They are just doctors someone found helpful. Dipti Vyas, MD South Meridian Pediatrics Greenwood, Indiana Office # 317-497-6120 Dr. Sharon Gilliland Rainbow Pediatrics Indianapolis, IN 317-255-7337 Dr. Chris Belcher, Pediatric Infectious Disease Infectious Disease of Indiana Indianapolis, IN 317-587-2300

Onset on 5th birthday.Asymptomatic strep infection diagnosed within a few weeks through culture (rapid negative). Put on antibiotics. Achieving remission of symptoms varied...each exacerbation took longer to recover from. Able to maintain remission without antibiotics. 100% better.

I'm sorry you're going through this and in this weather of all things. Well, if Pixie might have strep, can you increase the penicillin you have? What you're giving wouldn't be enough for a strep infection. Otherwise, try to give her as much space as you can in the event she doesn't have strep but is reacting to you having it. I don't think Dr K will turn his back on you. Call him and expalin everything. He lives close enough to you that he's in the blizzard too. He knows you stuck right now. Maybe he can call a prescription in for you too.

This is the link it's from http://hpathy.com/homeopathy-papers/pandas-%E2%80%93-a-carcinosin-case/ Unfortuantely, when you flip through articles written about PANDAS, you will occassionally see authors hinting about permanent damage or outright stating it. I've seen this happen a number of times. When I see them, I just think to myself that the author is trying to stress the importance of diagnosis and treatment and for a type of shock value perhaps.

I would ask the screener from the study what the cut off time frame is that your child would no longer be eligible. Ask them to keep her on file. In the unfortunate event things worsen, there's a chance you and your husband may have a change of mind. Leave the lines of communication open with the study people just in case. There is always a chance your child could get better with antibiotics, time, etc. Don't feel just because you pass on the study right now, things can't get better. Stay optimistic!

To my knowledge, there's no evidence that there can be permanent damage. Did she has a reference section after the article? Here's this from Buster's Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6266 Q: Does PANDAS cause permanent brain injury? A: At present, it looks like exacerbations in PANDAS do not cause permanent harm to the brain. MRIs reveal no demyelization and while there are reports of enlargement of the basal ganglia (a part of the brain controlling fear, hunger, and motor skills), this seems to remit after treatment. We all certainly hope this is the case.

If you don't mind publicly posting the results, it's usually the best way to get feedback. Then, others who have similar results can chime in too.

Welcome. How long has your son been on Augmentin? You should also have all family members tested for strep even if they do not have symptoms. This is how we found ot our two non-PANDAS kids are asymptomatic. PANDAS kids can react to exposure as well. As if you have someone with strep in the house, you can get reinfected. For each child, the right antibiotic varies. If after a certain amount of time the Augmentin isn't doing anything, you can try another like Zithromax. You also want to keep the immune system calm by avoiding any allergens and thinking hard before administering any vaccinations right now.

Welcome. First, ODD is a symptom of PANDAS and it was once explained to me that with some kids ODD goes along with OCD. You mention you aren't quite sure she had OCD, but sometimes parents don't quite realize what they are experiencing is OCD. I'm not saying she it, but here is a link to examples of OCD in young children as seen by PANDAS parents on this board. Perhaps print it out and the two of go through it like a checklist if she has experienced it Signs of OCD in a young child http://www.latitudes.org/forums/index.php?showtopic=6153&hl= Next thing...penicillin. Few things on this. Penicillin and amoxicillin clears some people of strep, but not all. In the world of PANDAS, it is actually almost rare for amox or pen to clear strep. Here is a link on the failure rate of these antibiotics http://www.entrepreneur.com/tradejournals/article/169459644.html Also, some kids seem to first improve on penicillin or amoxicillin but it seems they start to backslide around week 3, probbaly becasue the infection isn't completely cleared. Also, there are some kids on here that backslide whne going off antibiotics. What I would suggest is first looking for a new ped since yours is already on the defense and then get a script for something else like Augmentin or Zithromax. As for the rest of the rest of the family, you could start with "basic" strep testing...rapids and cultures. My 2 non-PANDAS kids are asymptomatic to strep but will test positive on a rapid. I always say start with rapids and cultures since if they come back postive you can start antibiotics faster. If anyone tests postive, they need to go for a follow up strep test 3 weeks after finishing all medicine. Again, I know it's tedious, but it sounds like you need a different doctor.When searching for one, call, ask questions, also for the first appt, you don't necessarily need all med files transferred. This will allow you to "feel" out a new doctor before doing the transferring of files. Finally, here are a couple more useful threads to read PANDAS Fact Sheet http://www.latitudes.org/forums/index.php?showtopic=6265 PANDAS FAQ http://www.latitudes.org/forums/index.php?showtopic=6266

Well, if by chance she gets the placebo, it does state "Subjects who fail to improve 6 weeks after blinded IVIG/placebo administration (1.0 gm/kg/day of IVIG on two consecutive days; total dose 2.0 gm/kg) will be eligible to receive open-label IVIG." Good luck on the second phone interview!

The total for the study is 2.0 gm/kg total. It's given over a course of two days...so probably 1gm/kg each day. http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01281969 Intervention(s) in this Clinical Trial •Drug: Gamunex Intravenous Immunoglobulin ◦2.0 gm/kg total, IV (in the vein), over 2 days •Drug: Placebo ◦Normal saline, IV (in the vein), over 2 days

Wow. It's been a year. I, too, am glad you are able to see the positives and blessings while on this journey.

I had a talk about this with our new dentist. He said adult teeth are darker than baby teeth so if you have a mix of them in the mouth, the adult ones may seem even darker, cleaning teeth will help with any discoloration, we asked about cleanings every 3 months and he said thre was no need for that, he checked with a pressure thingy (my technical term) to make sure abs were not causing any weakening of the teeth, finally he said do not brush teeth immediately after taking a liquid antibiotic. Rinse with water after taking it, but wait 20 minutes to brush.

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