T_Mom

I am so sorry -- Hold steady TPotter--you are one amazing mother and I am glad to hear Dr B was able to find a help for you along the way-- Do be gentle with yourself, I am glad to hear you were on a vacation and hope there is a way these issues can work out--

Sylvia, I hope you don't mind but I think this is very interesting and wanted to bump up your post on the Clav.Acid issue and autism. The opinion article you make reference to had a corresponding opposing opinion response in the medical journal -- (I have yet to find it, so cannot post yet.) I find this very interesting as when our oldest "typically functioning" d was in the midst of an exacerbation she demonstrated behaviors which looked like ASD issues. Thanks for bringing this to the forum. ______________________________________ Sylvia wrote: I also wanted to add that I am a bit afraid of Augmentin because of the link to autism via increased ammonia levels: http://www.ncbi.nlm.nih.gov/pubmed/15607562 Anyone here have any thought on this? Nicholas regressed into autism as an infant. After each round of vaccinations he would always react very badly - actually text book vaccine adverse reactions, but pediatricians never aknowledge that vaccines can ever do harm, so I was always told these things were nothing to worry about and were either normal or coincidental. He had projectile vomiting, fever, high pitched screaming with arched back (which is the sign of brain inflammation, but I was never told this at the time),couldn't nurse or take a bottle, and extreme aggitation. I would take him in to the ped and he would always be diagnosed with an ear infection and put on antibiotics. Things got worse and worse untill his last shot and antibiotic when he stopped screaming and got that blank look on his face. An autism diagnosis followed. So I have always been afraid of antibotics untill just recently with the life changing effects of Amoxicillin. The Augmentin is intriguing to me, but I am also a bit terrified. Sylvia

Our oldest d (who had very severe obvious Pandas symptoms) had vision issues which caused us to take her to a specialist--ran all types of tests, and nothing more then a reported need for glasses for the first time. I do think Pandas can affect vision issues, inflammation would be my guess, but I am not a doctor. Her symptoms improved once treated. (Still needs glasses!)

Great thread--(as both our kids are on Augmentin now--) So...in review, "start out and see" working upwards as necessary--seems to be the conclusion I would draw. From our experience, 875mg twice a day of regular Augmentin was not sufficient, and after about a month we switched UP to Augmentin XR and saw improvement. Amox. full strength DID work for our oldest d for 9 months--but she recently was switched to Augmentin XR as I tried to back off the Amox. and she backslid tremendously (thankfully summer months.) Happy to report that she is (hopefully) seeing some improvement after a week of XR twice a day (125 lbs.)

Hi, I don't know about Tenex, but if your d has Pandas most on the forum have had good results with the Pandas treatments, (increasing as necessary.) Have you tried them? (Buster's flow chart?) Long term antibiotics and steroid bursts have really helped our daughters. The recent meeting at NIH there was much discussion on the good effects that doctors have seen with such treatments--on Pandas related OCD/tics. Stress, exposure to illness, yes these all effect Pandas kids, most would agree certainly... It took me a while to get to the point that I was willing to try Pandas "treatments" per se, but the pain and struggles necessitate it for our kids, so they have a childhood. I hope you find relief in treatments soon--I know we have had to try one thing and then another, before we saw improvements.

Elizabeth--I am curious what do you mean by "12" probiotics? I know we were told to give out d one or two "Pearls" probiotics...or another type...Good Belly juice, etc., so I am just wondering what type you would give 12 of? thanks--

Thank you all for the replies. Buster, your explanation really helps to shed some light on this for me--So as you say, it is an, "asymptomatic carrier". "This means that someone is carrying the bacteria and can be cultured positive (colonization) but does not have immunologic signs of an infection (no classic sore throat, no rise in ASO, no rise in AntiDNAseB, etc)." Essential then to get all in the family tested--with an exacerbation...as it may shed some light on the situation. Thanks--

Can anyone explain what it means to be a "strep carrier" and how do you test for it? Thanks.

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?

Hi and welcome-- Yes, we are using antibiotics as a "treatment" to both eradicate any strep initially -(or other) issues and to affect inflammation as we understand it. The benefits are DEFINITELY more than just "preventative", there is some type of active modulation by antibiotics. OCD and tics in both of my daughters are diminished with antibiotic use--long term, full strength. That is a unique and distinct reaction which is (apparently) limited to children with this issue. It takes time for the inflammation (if severe) to diminish, but the change is obvious.

This was a really good thread for me to read tonight. Our oldest d is in the midst of a mild episode, but definitely having symptoms (moderate OCD intrusive thoughts, anxiety, focus.) I tried to cut back on the abx, and did so incorrectly ...she flaired. (She was also exposed to strep/friend in mid-July.) We are switching antibiotics to Augmentin XR...I keep thinking "it" will just GO AWAY, right away. I needed to be reminded the recovery from a flair takes time, thanks--

Our one d has had an excellent reaction to steroid bursts (one 10 day, and later the second one was closer to 4 weeks including the taper.)

nevergiveup--We give vit D in gel pills form--1000mg a day, with breakfast. I vary the type, and get it at Wholefoods.

Nancy--I am so sorry, what a nightmare of a time. I can't help reflecting that the psych. was apparently out of touch with the reason you are pursuing treatment: to try to HELP your d. Truly, he must know nothing about the symptoms of Pandas for if he did, he would have known why you felt the treatment was worth trying-- The Psych. who saw my d through the worst of times was convinced that there was some physical causation behind her sudden onset severe symptoms. Anyone that has lived this nightmare would understand. I wouldn't bother about the letter for the very reasons you said -- Let Dr L. know about it, and see what she would advise. Take care--

That is a very interesting article -- Thank you for posting it. My grandfather had Parkinson's very severely, and I have had chronic inflammation (High CRP levels) for years-- I wonder if we can sign up to get that genetic testing thanks--

Graceunderpressure--I would try to see a doctors that has had experience treating Pandas, to check if this might be the case--There is a post, at the top of the Pandas forum page, under "Helpful Threads" where parents have listed doctors seen who were helpful. I think that is really important in treating correctly possible Pandas issues-- (Chemar, I have to ask--what type of lemon-balm tea? Jasmine oil--great suggestions!)

Searching Mom-- You can see a list of parent generated doctors who have been helpful with PANDAS issues. Go to the main PANDAS Forum page and at the top of the page, under "Helpful Threads" there is a post which Parents add to periodically--Hope that is helpful. Keep looking--that is what we all have done, and continue to do, to see our children through to the wellness they deserve.

This is a GREAT clip! Nightly news picking up on this--amazing! If these dear parents are on this forum -- Thank you! for going public and telling your dear daughter's story--I wonder what hospital and which doctor was helpful to you in FLA? What medications? Great story--another testimony to the effects of Pandas and the treatments--

Tpotter--Oh my goodness--thank heavens you were checked as well!! Keep us posted as to how it goes now--and how YOU are! Best--Tmom

You know--it is so difficult to remain positive for so long with this--We all know that! I am sure you will make an impression with the info. shared -- good luck!

Mandy--So glad it went alright so far--hold steady, and I shall be thinking of you--let us know how it goes--Hang in there.

I think I would just forward the recent blog entry by Tom Insel (Director of NIMH) to the doctor-- I am sorry, but this is so incredibly rude, insensitive, and unprofessional, period.

weird--both of our kids have a spot like that--quarter-size white and never tans.

Incredible -- and from Tom Insel himself, this is huge. I am almost too moved to write anything here -- YES to all said above -- finally... Doctors, Moderators, Pandas parents, thank you, thank you, thank you--

That is great news Lynn--Glad to hear things are going well on an upswing! Good luck with the algebra! I understand your sentiments re the probiotics, and have seen good results with kefir, etc/ Hope it all continues well--