thereishope

I haven't heard of a Myco P/aggression link before, but I can see aggression being a symptom w/PITAND as it is w/ PANDAS. My son had strep triggers and he got very aggressive. So, if that is your main symptoms, still rule out all possible triggers.....(Just adding adding that clause for anyone newcomers reading this).

Buster did this thread awhile ago and many newcomers probably never saw it. It's entitled "adhesion, colonization, invasion and infection". I thought it was a great thread and I particularly found this statment interesting so I bookmarked it.... http://www.latitudes.org/forums/index.php?...ic=5520&hl=

.

When my son had a sinus infection he wasn't bothered at all by it. I only suspected it since he had an on and off cold for so long. The ped believes his may have been caused by allergies, but it was still infected and he still got antibiotics for it. After the first round, it was still there so Flonase was added to the Augmentin to help drainage.

I added it onto the ongoing doctor list in the pinned threads.

Well, this is Swedo's theory as relayed in Scientific American Mind through the writer of the article... http://www.scientificamerican.com/article....-throat-to-mind "A more accurate method of diagnosing PANDAS could help get affected kids the right treatment—and Swedo estimates that these kids may make up as much as 25 percent of children diagnosed with OCD and tic disorders, such as Tourette syndrome." So...if you say there are 1M kids w/ OCD and 1M kids w/tics disorders, that means... 1/2 million kids are PANDAS. But, like you said, how many carry a co-diagnosis.

If your son will be taking liquid prednisone, it doesn't taste that great. So, if he tends to fight over meds when he's in a possible exacerbation, give him a little at a time, squirting it in the cheek area.

I know some don't want to say who their doctor is, but the leading PANDAS doctors who know what they are talking about are Dr K, Dr Latimer, Dr T, and Dr B. Where do you live? Until you speak to them or get an appt, if it's your pediatrician saying this, call around and find another one. How have they ruled out another strep infection? What have they done so far? Perhaps there is something we can suggest to you so you know what to say when finding a new pediatrician. Have you already done strep tests on everyone else in your house?

I read it awhile ago so I don't fully remember. I just remember being very surprised. I want to say that Ibuprofen passed the BBB better? Don't quote me on that. Why? Why does one work and not the other?How about asprin?

Received this today. don't know if it's on that website...

Alzheimer's and PANDAS have more in common. The NSAID Ibuprofen, can slow down the onset of Alzheimer's. However, the NSAID naproxen sodium does not. With PANDAS, Ibuprofen eases symptoms in some kids. However, the NSAID naproxen sodium does not.

This is also the worst year for allergies across the country, in general. My non-PANDAS son takes Claritin. Usually it works fine for him. Well, not yesterday. His eyes were red, coughing for drainage. I may have to switch meds with him. PANDAS son takes Benadryl. Luckily, that seems to be keeping up with the allergeis right now.

Anyone can comment. You set up an account first. I wrote them over a month ago. Never heard back. I think there's mixed feelings/opinions whether PANDAS or PITAND should be listed in the DSM 5 amongst PANDAS parents.

Also be patient with us. I go on this forum daily for a year and sometimes I don't even realize what I'm typing may be slang to others. My husband doesn't research PANDAS or go on forums. When I try to explain something to him he looks at me like I have 3 heads. Thought of another one... BBB-Blood Brain Barrier

You can bring our the rheumatic fever analogy. Prophylactic antibiocs are used to help prevent strep infection in RF. Granted, it doesn't 100% protect your child, but it lowers the chance of reinfection.

I think many of us just have a small window to type hence the abbreviations ds-dear son ......sometimes they will add a number after to indicate age dd-dear daughter dw-dear wife dh-dear husband dx-diagnosed abx-antibiotics abs-antibiotics ped-pediatrician Are there others?

Well, DSM V is under construction and there is no intent to include PANDAS, PITAND, or anything of the such in the new publication. The rough draft of the DSM V is available online for viewing and commenting. http://www.dsm5.org/Pages/Default.aspx

KeithandElizabeth's child has symptomless allergies. Test showed allergies, yet no physical symptoms. When my son was recvering last year from a strep triggered exacerbation, his PANDAS symptoms exploded about a week before any physical signs of allergies. Allergies were the culprit for that horrible setback. I guess PANDAS is more sensitive than the eyes, nose, etc.

Buster's Charting System http://www.latitudes.org/forums/index.php?...ic=6685&hl=

Also, wash the sheets, change the pillow cases more often, and either vacuum more or sweep the hardwood. I have to get the curtains down in their bedroom and wash them. I can see the dust when I open them.

When my son was recovering, allergies sent him over the edge. I still vividly remember the meltdown due to OCD he had that sent us to the dr for a strep test. Oh my goodness, it was one of his worst ones. I was dumbfounded when it said negative. It was odd, his PANDAS worsened BEFORE physical signs of seasonal allergies. One weeks after that meltdown his eyes were completely red. A few days after allergy meds got in his system, the eyes got better and the PANDAS symptoms got better. Now that he is recovered, this year allergies did not affect his PANDAS! However, I should add we started allergy meds the second we thought they might be surfacing. Sure enough, a week later his brother's allergies were full force.

I will add that when my son has a strep infection, he will worsen for anywhere between 3-5 days before I see any improvement.

I am so sorry. We lived through a similar timeline surrounding spring break then a full "eruption" shortly sfter he returned to school. For my son, he had strep again. I know your son is on antibiotics and that can cause a false negative on a strep test, but it may be something to do. If you do get him a strep test, make sure the doctor remembers that he may get a false negative. As for school and classmates, the school nurse is correct. Often parents do not say the reason for absence. They simply say "Tommy isn't feeling good". Has he ever done a steroid burst before? That is something to consider. You are wise to rule out strep in all family members as well. If he is sick again, it may take longer to see the results you saw the first time he went on high dose Augmentin. Sometimes subsequent infections are a longer recovery. Finally, it was said on here befroe that high dose Augmentin actually starts to kill the strep as oppose to just slowing down reproduction of the bacteria. I don't know at what dose it switches gears.

I can only relay my own experience with my son. It was a long, slow recovery. I saw reaching a plateau and the spiral down stopping as improvement. I usually began to see glimmers of something good happening around day 3 of antibiotics, but it was not huge and no where near 100%, not even 50%. I can't even out a number on it. I hate putting numbers on things. I would say it took about 2 months for exacerbation #1 and 2 for my son to get better and 5 months with directly attacking residual OCD to get him back the 3rd time. For me....as long as I saw an overall steady improvement (even if it was small things here and there) I knew he was getting better. Yes, we had bumps and setbacks. I had a 3 day rule when that happened, unless it was such a slap back that I just got that feeling he was sick again. You may think you don't know what that is, but if you've experienced that after seeing some recovery, you know. Make sure you keep track of progress whether through Buster's charting system or by keeping a journal. It really does help.