kmom

That would be fantastic!!! Thank you so much! My wheels have been turning for days but all of my connections are locally here in the Lansdale area. I'll be in touch.

Thanks! Kathy, Beth Maloney's support group coordinator, did mention to me that there's a group out that had the same problem as us and that they travel and meet at different restaurants and locations each month so that's a possibility. Good idea about the Sheraton. I'll keep it in mind. The two other moms forming the group and I are just trying to keep costs very low and so far the hourly room rate is higher than we imagined. One of the other moms checked with a nearby college but charged by the hour. I'm checking another college. We're also checking churches. The hardest part is that we're coming from so many areas to this one central location and none of us have much of a connection to the King of Prussia area. We're also aiming for a place that we can have privacy so people feel as comfortable as possible without a wait staff popping in and out. We noticed that on a smaller scale when we met at Chilis to plan the group. We were sharing our PANDAS journeys and it was distracting to have the waitress and other patrons around. We'll keep you posted. So glad you are interested!

Tpotter, So mine sounds crazy high then, right? My IGg at 4.64? I was so upset when I read the bloodwork. My DS has the rage but both specialists didn't think I needed to be treated from the results from June but now that DS is showing flare-up, Dr. B. just re-tested me. I'm anxiously awaiting my results!

Oops! I didn't mention that. Our results listed above are IgM levels. We also had the IGg's tested. Mine was 4.64 Rest were <0.90

A couple of us met to start up the Philadelphia and surrounding areas support group. We're very eager to get started! We're all set but still stuck without a meeting place...well one that doesn't cost an average of $50/hr. We have one more lead to check out but if that doesn't pan out we're back to square one. We feel King of Prussia is the best centralized location amongst those who have shown an interest. So if you know a place that would be willing to host us 1x/month for free or a VERY minimal fee, please let me know! We've been searching churches and colleges. Thanks!!!

Don't have a lot of info for you but do have lab work here. We had the whole family tested for strep and mycoP. Here are our mycoP results: Mine 169, DH 172, PANDAS DS 138, PANDAS DD 50 We were told by DR. T and Dr. B that we were all ok in that area. Not sure how your lab tests and calibrates it all but it might give you a hint of an answer till you get medical advice or someone else can chime in from the forum.

Last year before PANDAS struck my 2 kids, I worked hard to hunt down the seasonal flu and H1N1 vaccines thinking I was the good mom warding off the flu b/c of their asthma appears w/ upper resp. infections. (this was their first flu vaccine ever). After my DD's PANDAS dx from CHOP Dr., we were told to ALWAYS get the flu vaccine. As I learned more about the disorder, I questioned that advice but I also wasn't pleased with other things said/done as far as PANDAS treatment w/ that particular Dr. so I sought out Dr. T and Dr. B. I asked Dr. B last week about the flu vaccine and he said, "Absolutely NOT!" I am taking his advice. He is concerned how H1N1 vaccine particularly played a role in my kids PANDAS and he said that IF kids get the flu, he will treat with Tamiflu. My kids cheered when they heard they wouldn't get stuck w/ another needle!

Both of my kids just did the IGeneX Lyme and co-infections test. We're anxiously awaiting. They were born and raised in Puerto Rico where I've heard and read Lyme doesn't exist. True??? If you know have any info it's greatly appreciated. Also, could fleas, mosquitos and other bugs pass on Lyme Disease? My kids went camping last year in northeastern PA and came back with terrible bites all over stomach so not your typical tick bite but wondering if that could be the cause if they are positive.

Dr. T. said it was fine to give DD8 and DS5 3mg melatonin nightly and almost every night I do. It they lose sleep, their symptoms worsen so I find regular sleep to be a VERY important thing. I find it best to administer like 30 min b/f bed and then have quiet time watching tv or reading till they fall asleep b/c I've felt a few times we missed the sleep window of opportunity and they stayed up past the effects of melatonin if they were too engaged in something more exciting than just relaxing.

Personally, I'd still go to the appt. Seems like you have so much info already. We did an evaluation day 1 and allergy testing day #2 If you plan to allergy test, I'll give you a tip b/c I didn't know this. I wanted both kids tested for environmental and food allergies. DD has was tested 2 yrs. ago but that allergist didn't test quiet as many things. When we arrived for allergy testing, the nurse asked whether we were doing environmental or food testing. I said, "Both!" She said, "Well there are 72 allergens to test in each category (food/enviro.) so Dr. B only allows one test/day. You can return tomorrow for whichever one you opt not to do today." But we had already checked out of hotel and planned on leaving that afternoon. She said when we returned in a month, we could do the the rest of the testing. So we did enrivo on DD and food on DS. DD has had a known peanut/tree allergy since 3 yrs. old so it wasn't urgent we recheck that altho her OCD made her want to see if she's grown out of it but I knew the enviro ones were more important since she had been having issues since moving to PA. She was allergic to so many environmental allergens that the nurse, Dr. and receptionist each commented. When Dr. B entered room and saw her arms, he said, "You win!" to my DD. DS didn't react to food test thank goodness but have a feeling he'll react to enviro test. So Dr. B said we should start DD on allergy shots and that he'd make up the "Cocktail" so to speak and our local ped. office to administer. I know there are conflicting views on whether to treat w/ allergy shots w/ PANDAS but Dr. B thinks it's necessary and it affects her everyday happiness when she reacts to triggers with stuffy/itchy nose, etc. So other than the IGeneX test results, you should have good info to present to get Dr. B's opinion on to treat your child. I had my questions typed up and I felt like I won the lotto to hear answers to questions I've pondered in my head as I have learned more about the disorder and the specific symptoms we deal with daily. He left it with us that he wanted to start IVIg on DD next month. He just needed to get the bloodwork results returned from Quest and IGeneX to make the final case to the ins. co. for pre-cert of coverage for IVIg. I spoke with him last night on the phone and he said that he will try to coordinate our follow up visit to talk about lab results, allergy testing/shots and even administer IVIg now that I got the testing done so quickly. This way we get it all done in one trip...maybe not allergy shots/testing all and IVIg all in one trip but he wants to get IVIg going b/c not sure DD is going to make start of school next week due to anxiety and OCD. My DS is a few weeks behind as far as treatment. DD was dx'd first last May and is a classic (was severe) textbook PANDAS case that was caught early and Dr. B feels she's a great candidate for hopefully only 1 IVIg, possibly 2 since she hasn't been sick and dealing w/ disorder for years. We'll see. We're on 3rd ABX and ibu and can't push past 75% wellness. If you have any questions, PM me about CT...where to stay, eat, etc. I met Lauren Johnson (sneezing girl mom) @ Dr. B's office. What a lovely lady and she gave me some great tips for next trip.

We had our first appt w/ Dr. B last week. We brought almost all the possible lab results to put the pieces together for our kids' PANDAS treatment but Dr. B said he wanted to get a Lyme and it's co-infections test done by Igenex since my DD was the only one of the two kids tested for Lyme. Back in June Quest labs only put neg. titers and stopped there...didn't check Western Blot, etc like Dr. T requested. Dr. B gave us the signed Igenex form, I called Igenex for the kits last Wed., they shipped Thurs, got them in Sat. and went to Quest Lab yesterday (Mon) to have blood drawn. For Lyme's and co-infections there are 2 collection tubes/kit...one needs to be spun down to plasma. I returned to lab after spinning to pick up tubes and in the meantime called Fed Ex to pickup kits later that afternoon. Make sure you get back your tubes AND the PAPERWORK! My lab got confused and passed on Igenex paperwork along with other paperwork for some other bloodwork Dr. B wanted to redo thru Quest. So I panicked as Fed Ex was about to arrive and I was missing key paperwork w/ all pertinent info, payment and Dr. B's signature. I called Igenex and they said to cancel Fex Ex pickup and retrieve the paperwork from the lab which was just closing. I talked to Quest today and they managed to have their other office where paperwork was sent to to fax the Igenex paperwork so I can have Fed Ex pick up blood kits now today. The Fed Ex end of it is very simple b/c Igenex has an account and so you just hand Fed Ex the kit without extra payment, etc...altho, the tests themselves are expensive. Soemthing like $260 for Lyme's and $660 for co-infections. We did get a 15% family discount for testing both kids so it came to just over $1500. We HOPE Blue Cross covers it after we get a receipt but payment is due at time you send the blood kit. But what choice do we have? Dr. B wants all answers to possible infections compounding PANDAS b/f pre-certifying kids for IVIG. I need to know for myself too. If Dr. B wants those results before your appt, won't he just fax you the signed form?

Thanks so much for the info!!!!

Feeling confused on some of this...both of my PANDAS kids born and raised until last year in the Caribbean, moved to cold winter in Philly and strep throat became a huge problem then this year from Jan. to Apr. for DD8. Along the way of persistent strep infections we got whole family to have throat cultures. DH and I neg. DS5 pos! Dr. said he's our carrier. DS doesn't complain of sore throats much (nothing to ever have believed strep throat) but has been our sinusitus/chronic ear inf. kid and ironically body/joint pain over the years and many other PANDAS-like symptoms but without the knowledge just honestly thought of him as our tougher child to handle compared to his sister. DD gets T & A and tubes in ears and PANDAS hits likes a flash. After visit to ped, allergist, CHOP, etc. finally see Dr. T and has whole family do bloodwork...focusing on DD @ this point of treatment b/c didn't think DS had PANDAS. Both kids come back with remarkably low strep titers and also low titers for mycoP. It was mind boggling to me at first that we had so much confirmed strep for months and such low strep titers. Then Dr. T explained more. He then tested kids' pneumococcal titers a few weeks later. Here is a part of Dr. T's email response to their results: A normal response is adequate vaccination in 6 of the 7 Prevnar antigens. "DD"shows a good response to 3, and "DS" to 2. Remarkably, this deficiency seems to be serotype specific between the two children. They tend to show weak responses to the same serotypes, and vice versa. This is a very common finding in children with PANDAS and may explain why they never generate high ASO and anti-DNAase B titers. So that explains the low strep titers b/c he said strep and pneumococcal are like 1st cousins and respond similarly. What about MycoP tho? Could that be lurking in them too, especially DS??? I ask b/c the PANDAS seems to manifest differently in the 2 of them. DD--major contamination fears and tics (the biggest issues altho there are more) and DS has more rage, needs everything to be done PERFECTLY, O.D.D, reverts back to childish behavior (cries easily) and some tics. I have read a lot lately where the more rage-filled kids seems to be suffering from MycoP or Lyme. Could MycoP also be compounding the problem but we don't know b/c titers didn't rise? And if so, if Augmentin the best abx choice? He was on Azith and was doing wonderfully (completely new easy going HAPPY boy...DH was AMAZED!!!) but he backslided after a few weeks so we switched to Augmentin. He's doing ok...much better than week he backslided which was horrible but he's not where he was those few weeks when AZith seemed to be working. BTW, both kids having Igenex LD and co-infections test once kit arrives. Any advice is greatly appreciated.

I don't have much advice about the medical side of it since you are farther along than our situation but as far as how you r feeling, it's great u express it especially on here where we all understand. I finally went to an overdue yearly gyno exam yesterday. When dr. noticed I was overdue I briefly explained how I unfortunately entered the PANDAS world and you eat, sleep and breathe it. And at the end of the day, the last thing you think of is your own health let alone making an appt w/ yet another dr. But I knew it was the smart& responsible thing to do to keep myself healthy. She told me at the end that no matter what, find time for myself to reboot whether that be a nice longer break or only a 5 min. moment alone in a quiet room to regroup, meditate, stretch, etc. I joked and asked her to write a prescription for that so it would be my "time out/reboot" pass. So good for you for venting. It's normal for all of us to act according to how our kids are feeling b/c we want the best for them. Try focusing on all the great stuff you have done for him thus far. I have a 30 year old cousin who I would bet any amount of money started off in a PANDAS/PITANDS situation as a child and back then the docs he went to only knew to put him on SSRI's and Ritalin for his OCDs, irrational fears and hyper activity. He had a nervous breakdown at age 14 or so and things spiraled more out of control. He refused meds b/c they made him feel worse. He refused to let anyone touch his food and he limited his food to 3 items...orange juice, yogurt and steak. He's only gotten worse over the year and basically doesn't come out of the house, hasn't brushed his teeth since the breakdown and the list goes on and on. I've tried to get my aunt and uncle to work w/ Dr. T. to get him even a little better but they have no clue how to do it when he refuses treatment...long story! Whenever I feel down about my situation, I think of how much worse things could be and it gives me a boost and that extra fire to fight so that my kids' fates are different than that sad sad situation. I know experiencing glimpses of my cousin's life growing up has made me practically OCD about fighting back against PANDAS. I am in no way trying to minimize your situation either. Just reminding you that you are doing a good job! Would any another opinion from another specialist help?

Oooh, just checked Dr. T's forum and there is info from him. I'll cut/paste/post below! Hope this helps! [i]Strep Thermophilus - some thoughts I've been reading as much as I can lately about Strep Thermophilus (ST). This is a strep which is thought to be very benign. In fact, it's one of two bacteria used in the commercial production of yogurts and cheeses, including most of the ones favored by kids. Pretty much all dairy other than milk itself. Thermophilus survives the pasteurization process. http://microbewiki.kenyon.edu/index.php/Streptococcus_thermophilus A few probiotics contain ST, but most do not (Florastor, Culturelle are examples of ST-free probiotics, for example) I'm aware that ST is as similar to Group A streptococcus as humans are to jellyfish. Nevertheless, I've been starting to get a few reports of children worsening on ST-containing probiotics and improving coming off them. As cheese and yogurt eaters, most of us ingest lots of live ST and seem to be no worse from it; it's undoubtedly benign to most everyone. But I would be cautious in a child with PANDAS or suspected PANDAS. If your child is a big yogurt and cheese eater you may want to see if there is some improvement of behavior with elimination of those from the diet. Milk and ice cream are OK (but maybe not frozen yogurt). Pizza is OK as well even though mozzarella cheese has ST as the high temperatures used to bake the pizza kill all bacteria. Just a thought - parents are always wondering about diet and behavior - for once here's a semi-rational reason to modify the diet. Interact My Recent Posts A Consumerlab.com #1 [-] Posts: 1 06/08/10 18:23:15 Consumerlab.com does reliable independent testing of supplements including probiotics. They tell you the actual components and whether you are getting the full amount of the supplement that the company states they are providing.[/i]

Caring Mom, Good question. Not sure. My DS hates the smell of yogurt w/ a passion. He seriously leaves the room if DH or I eat it. My DD doesn't despise it but doesn't like it which is strange since she was addicted to those Danimal drinkable yogurts thru toddlerhood. You could always post the question on Dr. T's interactive forum on his website. Go to http://www.site.neurokidsr.us/Practice.html and click on PANDAS Central. It has a lot of good info to read and if u post a question, he's usually good about replying.

My kids take Culturelle--one capsule daily. Dr. T. told us no yogurt for PANDAS kids and only certain probiotics that he approves (ones that don't have strep in them) b/c PANDAS kids are too sensitive. He approved Culturelle(found in grocery store and pharmacy) and Florastar(pharmacy). He's had patients where he's treating w/ abx and ibu but the yogurt or probiotics has good strep in it to replenish good bacteria in gut but that strep is causing PANDAS issues. Dr. B told us at appt this week that Culturelle is just fine. We haven't had GI issues yet...fingers crossed!

I still would have done the T & A for sure but would have changed one very important thing. It pains me to type it b/c now Dr. E from CHOP, Dr. T and Dr. B have all told me my DD should have been on prophylactic abx before and after surgery. If I knew what I know now, I would have demanded it or gotten another ENT. DD had been on abx from Jan '10 thru end of March...actually just a few days b/f surgery. She didn't show any throat infection symptoms w/in those few days. I asked Dr. @ pre-op appt about abx and he said he didn't do that. The whole reason I wanted tonsils out was b/c I was tired of putting her on abx's (no PANDAS symptoms up till surgery) so I had no clue that it should be done. I was happy to have her finally off abx...how ironic! I trusted the ENT. I know better now and I tell every person I encounter having T & A to get prophylactic abx pre/post op. Just had first appt with Dr. B and he too said, "She should have been on abx before and after surgery." It always burns my ears but as the specialist have also said, we can't guarantee PANDAS wouldn't be present today, but one or two described it as a "strep explosion". You live and you learn. So yes to T & A b/c I have learned that tonsils are good at helping to fight infections until they are diseased. After that they aren't helping. In my DD's case and for myself years ago, chronically infected tonsils do way more harm than good. I remember getting mine out senior year of HS and my ENT said they are like a very porous sponge. Once bacteria gets imbedded in there, it's hard to clear the infection. For me it was a fantastic fix. I had hoped the same for DD but 4 wks. post surgery the PANDAS symptoms popped up overnight and our life has been very different ever since. But without surgery, would we have ever cleared the infection??? Doubt it. She's immuno deficient for strep antibody production.

Thanks for responding. Just trying to figure our medical mystery out and get as much info as possible to make the best possible decisions on something that isn't so easy/clearcut. Our DD definitely had 4 recurrent strep infections this past winter, tonsils removed and then PANDAS hit. She has been on 3 abx's, Augmentin doing the best for her but with school starting we're realizing we need to try to nip that last bit of OCD and tics or school may not be a reality for her. Dr. B thinks IVIG will do that for her. We thought we had all possible bloodwork done but since Quest lab only did the initial Lyme's test which was neg., we never got info on Western Blot and co-infections. So he wants DD to do Lyme's and co-infections panel thru Igenex. This way we'll know if any other infection is coinciding with PANDAS. So we'll see in a few weeks. You said it well...parenting is challenging enough, tiresome, rewarding, etc. But dealing with PANDAS makes us have to rethink how to handle so many situations that seemed so easy to handle before. Thanks for helping and best of luck!!!

I don't know about your specific ins. but I did see Dr. B. today and we have spent a lot so far out of pocket to get the ball rolling between visiting Children's Hospital Of Philly (PANDAS specialist dosn't accept ins.), Dr. T. who we're waiting see if we're reimbursed at all from paperwork submitted to ins. co. and just from bloodwork and Rx. I do know that Dr. T. in NJ mentions that you shouldn't be scared off by his $400 consult fee. He feels every child has right to be treated so he might work something out with you. We were charged $400 to see him. Back to Dr. B...we weren't sure if our ins. would cover office visit and allergy testing. His office visit is $300 and phone consult is $500. Much more worth it to visit his office. He was fantastic and less money than a phone consult. Turns out our PA Blue Cross was accepted. Felt like we won the lottery when only had to pay the co-pay! We had all our info--strep, mycoP and Lymes results. Oh and we had Dr. C's testing done and results with us. That help make things crystal clear for him. If you can get all that done ahead of time it should help. Plus, Dr. B's staff is awesome. Just tell them your situation and ask if they can help you in any way. You might be surprised. These docs and staff have a special spot for PANDAS kids/families. Best of luck!!!

I'm so sorry to read about daughter and will keep her in my thoughts and prayers. My DD8 hasn't had IVIG but Dr. B is going to get pre-certification from insurance co. I have been on the fence and trying to research what is best for her. We've done every possible test except for a more in depth Lyme's test thru IGeneX. After those results we're leaning toward IVIG. I so wish that was the answer to our prayers but who knows. Were you on the fence before you did it or were you confident? Was your DD tested and cleared for mycoP and Lymes and you think she caught it afterward or never tested?

I got mine and love it! Just showed Dr. B. @ our appointment today. He hadn't seen them yet. I paid a little extra and got 2 silver circle charms added to it with my kids names engraved on it. Looks so good! The name charms are slightly smaller than the center one that says "No Child Needs to Suffer." My mom got one too and loves it!

Thank goodness for this forum to allow me to vent and to make me feel sane! Just talked to a neighbor whose son was here playing. She had heard about the past 4 months of our "rough patch" since the PANDAS Dx struck. She was very nice about it but went on to say, "Yeah, I had a friend in college who had something similar. It was called Belles Palsy and she had the facial tics but soon enough she got through it and she was normal again." Of course, the bells and whistles go off in my head and thoughts of "Well it's way more than that and I want to whip out all the science and symptoms and the uncertainly of our days like how will things be when school start..." but all I got out of my tired head was that the OCD has been the hardest to deal with and then thought, "Oh why bother! I'm too tired to explain as I am making dinner and getting ready for a trip to Dr. B tomorrow." So as I thought all of that other stuff on the inside, I just said, "Well have a nice night and I'll send your son home in a few minutes." And I am thankful daily that we're not dealing with something worse b/c we have some good days. But, I keep telling my mom that no one gets it until they live it.

Before the PANDAS mystery unfolded for my son, I had him at the pediatrician for joint pain throughout body but mostly in his legs. I was told it was probably growing pains. I do have a cousin with juvenile arthritis but dr. told me many times fevers go along with JA so just don't make a big deal and tell him he's growing. After PANDAS Dx and abx and ibuprofen...no more leg pain

Yeah, I agree. At first I thought the docs were right and something strange happened with strep this year but the more I researched, we're just on the cusp of much more to come with PANDAS and the disorder is finally being recognized/treated more nowadays thank goodness!!!