T_Mom

oooh...poetmom that is good, really good!

(vent warning...) Hi -- I am sorry to be the voice of yet another "upset-Mom" but... #1. The doctor should have called you back -- not the nurse, given you are a patient and you were standing in the lobby crying... #2. IF on Friday, you do not leave with what you want I would strongly encourage you to have a back-up doctor (ANY on the list at the top of the forum??) near you--and go ahead and see if you can make an appt. now just in case. You may have to travel to see one. #3. This is very difficult and it does not help that PANDAS is a disputed illness--here 100s of parents are spending hours "voting" to raise 50 K for an illness that was identified and shown to be treatable via NIH research, and others around the world-- (hit the sarcasm button folks...) Hats off to all the "negative nay sayers" they certainly have been successful in hurting many, many kids...I hope their egos are stroked. I am really sorry you are going through this and I directly blame those nay-sayers. --sorry, too much time voting on the Pepsi Refresh--to raise money for something that should be a no-brainer for every pediatrician in the country.

Buster and Kim--You need to write and publish these thoughts for the general public, somehow. How, I do not know-- in what venue, I am not sure-- I just know that you both have insights and inklings of WHAT THE HECK is behind this malady and the ensuing controversy therein. Please...consider...(or I threaten to put YOUR names on a Pepsi Refresh competition and raise money to PAY you to do it. --I know we would have alot of voters ! --thanks for your insights. (NPR or John Merrow Report (he does 4 a year typically on controversies...) something!

Be sure to leave a note that "PANDAS 50 K " voted ! It takes a little time, but may be well worth it--

--and remember that titers may not show strep that is present.

We took our dogs in to the vet to be tested for strep but we were told that to swab them correctly (so very far back in their throats) they would need to be asleep! Instead the vet offered to treat the dogs with heavy antibiotics and that is what we did--appeared to be a prudent choice and cheaper--

OK, JAG came up with the following list for us to get-behind...and vote for -- Great list, I am using it every day--voting in a block seems to send a powerful message-- Great Job everyone!! PANDAS- ALWAYS VOTE US FIRST!!!!! WMS (25K)-#17 (stay with them) SKY U (250K)-#12 (stay with them) Sophie's cure (250K)- #9 (stay with them) Stop SMA (25K)-#10 (stay with them) SMILE Autism (250K)- #13 Ride 192 (5K)- they are 26th??? Ride MS (fairly secure at #6 spot, so don't need everybody) ? Synergy For consideration: Autism Prog of IL (25K)-#11 (I think we are already sending votes this way, but not organized) New Cottage Foster Home (250K)-#3 (so many may be courting these guys, high stakes!! could also agree no votes for #1 or 2 in their category) #4 is some haunted house thing??? oiye! Flagstaff Academy (5K)-#11 (seen them post high support for others, on the cusp)

Just to add onto what Karen is saying--Our daughter was SEVERE (ie, one of the worst cases of crippling OCD storm that many of the professionals had ever seen.) Mute for 3+ weeks, eyes closed, painful positions, regression, bathroom accidents, severe. She cleared with a prednisone burst and full strength antibiotics. It was certainly a benign thing for us to try...though at the time I was scared to death. We could not find anyone to do anything more at the time--or I would have...but, having said that, with us, with a very severe crippling case, a prednisone burst and antibiotics snapped her back ... after that it took months to get back to 100%...but we were on the way. I wish you the best and the best for you child--there is hope.

Oh my gosh--I cannot believe what I just read-- no desk or chair?!? empty room until she "earns back"...?! This is ruidiculous--I would ask the school Principal what does she/he think this will "tell" your daughter about how the school views her?...as an animal, or as a competent, "We know you can do it" type of student?!?--even when misbehaving, acting out, etc. every child deserves to have the school believe in them and be a positive support. Yes there are consequences, but she is sick. If it is PANDAS she can no more control the symptoms then my daughter could control the urge to walk circles or rearrange the book case in the classroom (when ill)...If it is PANDAS, reassure them that it will get better--that you need time. I would ask the district for a consult with a behavioral specialist before next year -- Call your local or state chapter of Council for Exceptional Children and ask them for a recommendation of a parent advocate to take with you. No need to be concerned about what they think of you-- What matters now is getting through the next few weeks, healing and resting over the summer--and getting well. Whether or not you choose to put her back into that environment has yet to be seen and there will be numerous factors for consideration obviously-- This upsets me so much I can hardly keep typing! I wish you the best-- I have been there and done that--I can tell you, I will never do it again. The concern is for you daughter only at this time--all else is a flash in the pan, and will not be long remembered. Her experience will. All the best, TMom

OK...so STRATEGICALLY... It DOES help to vote as a block for identified groups-- BUT we need to pick carefully -- they should be "large" groups with a firm bedrock base of voters. For example -- WMS is perfect, lots of middle school KIDS on line voting their hearts out and teacher is "talking" to PANDAS on the postings--this is GOOD !!! and ups our votes. A group that is CLOSE to the top (ie, in the top 5 for the 250 K AND has a committed group of voters, voting every day, is the type of group we should be voting for-- I think we need to leave the stragglers behind now. DOES ANYONE HAVE TIME TO REVIEW THIS AND SUGGEST A STRATEGIC LIST? smile.gif My "for sure to vote" list thus far: WMS, SMA, ride 192 (ALL are close enough to need us and have a good base of voters to act as a block-vote for us.) Great! The former list is OK, but I think we need to be a bit more strategic now...as those for example behind 100 th place in the 250 K (where only 2 win) are no longer viable for this competition--and will have far fewer supporters for US! A block vote is still the best way to show and get support--identifying ourselves as PANDAS (50 K) every time we vote, if we are voting together it is a much stronger statement!

OK...so STRATEGICALLY... It DOES help to vote as a block for identified groups-- BUT we need to pick carefully -- they should be "large" groups with a firm bedrock base of voters. For example -- WMS is perfect, lots of middle school KIDS on line voting their hearts out and teacher is "talking" to PANDAS on the postings--this is GOOD !!! and ups our votes. A group that is CLOSE to the top (ie, in the top 5 for the 250 K AND has a committed group of voters, voting every day, is the type of group we should be voting for-- I think we need to leave the stragglers behind now. DOES ANYONE HAVE TIME TO REVIEW THIS AND SUGGEST A STRATEGIC LIST? My "for sure to vote" list thus far: WMS, SMA, ride 192 (ALL are close enough to need us and have a good base of voters to act as a block-vote for us.)

I have come to hate Panda Bears---even cute ones!

We had an appointment phone consult with him and he was prompt, on time, and very helpful. I had called the office to make the appt. with the receptionist (2 years ago.) I have never known a doctor that is willing to email back and forth unless you are an established patient and they have indicated that they are willing to do so. I hope you are able to arrange a phone consult next week. All the best--

Thank you! I had forgotten MRA and SMILE...need to go back

I am voting for SKY U, WMS, SMA, Camp out against cancer, Ride 192, MRA WHO ELSE IS SUPPORTING US?? --Thank you! Keep voting and voting and voting!!!

YES!!! Deb-- Thank you -- on behalf of all the children and families that this may have an incredible ripple-effect on! WAY TO GO! I am sending a big hug to you both-- T:)

Great find! What a team this forum is in information-- Where else can it be said that individuals are so closely tied to sharing the pieces of such an illness puzzle? Great find--thank you.

Yes, there was a neurologist at Children's Hospital who was originally recommended to us (now moved to CA) who had treated PANDAS children with pheresis. I believe there are quite a few treating but for a variety of reasons, under the radar, or treating it quietly--We will never know all the cases. Thanks to the nay-sayers this has become threatening--and I think it is only the courageous doctors who are willing to help. Thank you Sue Swedo for putting this on the map.

Oh my, reading these posts makes me feel like I am reading my own life time and again!!! Our youngest d (10) has been on Augmentin 1000mg XR 2xs a day, 1000 mg vit C, probiotics, omega 3's (FLAXseed), multi vit, vit D 1000 now for about 5 months+....She is significantly better then she was in the fall certainly (ie, not opening the van door at 60 mph anymore--and no washing hands until they bleed.) However, there have been periods of difficulty (2-3 days at a time typically) of up-tics with serious raging and sensory sensitivity (sock seams, etc.) Typically, someone in her class at school has been ill, strep or otherwise (our school alerts us to strep cases.) These times are so hard to see when your child has alternative periods of good--nice--friendly personality. Heart breaking-- What else has worked for us? -- just the same as mentioned by everyone thus far! ...times of vigorous exercise, a more relaxed manner and expectations for day-to-day, adequate SLEEP (I think this is really important), healthy eating, adding trytophan loaded foods, and the extra vitamin C... These seem to help-- periodically I have given Advil (1 in the morning, 1 in the afternoon) but I don't feel comfortable giving this too often--at the most 2 or 3 days in a row is what we have tried.

A good strategic suggestion Vickie!

--could try opening a gmail account...

"We saw a pediatric neurologist lass week (Tess Nelson) who is supposed to be the best. It took us a year to get in. She felt this was an autoimmune basal ganglian syndrome and the PANDAS/SC was a symptom of a bigger issue with his immune system. She felt we might need IVIG every 3-6 months to keep him at baseline and that this was not an isolated strep issue. She also asked about my other children and said it often runs in families. We have been seeing subtle signs in my 6 year old and took him in. His strep culture was negative, ASO was 384. Very interesting." Hi Claire-- Tess Nelson sounds wonderful and like another "I recognize Pandas" doctor, where is she? Is she a pediatric neurologist?

Thanks for doing this!! Let's keep this at the top of the forum to remind us to vote and to get everyone we know to vote!! Great Job!

Good luck with it Lyn--I hope all goes well for you this weekend.

Kim -- the little response article by Swedo--fantastic! Thank you for posting that!