JAG10

Great post!

Whoa! Am I getting a hot flash or was SF Mom smoking up the NYT!!!!!!

hi Pam First disclaimer; there are many brrrrilliant parents on this forum, several who do or could do this (bio-research stuff) for a living. I'm not one of them, I'm smart enough but most of this microbiology is too advanced for me to analyze with my (lack of) background knowledge. Yes many PANDAS kids have lots of commonalities, at least one major run in with strep being the doozy, but the journeys; medical histories, immune system status, co-infections, symptomology presentation, cognitive status, access to treatment, age of onset, length of illness prior to accurate diagnosis and treatment, elevated titers/not, sudden onset/not, wax and wane/chronic, severity, ect., ect....... any broad statements about PANDAS children and therefore their effective treatment are going to be problematic. My dd10 was taking two psychiatric medications when we did the 5 day burst; Focalin XR and Strattera. She took these meds because I could not send her to school without them. Is your child on any medication? By day 6, my girl was reacting differently to her medication; it was too much for her, making her anxious and jittery, so I started to cut it back each day. Her psych meds made a clear ah-hah response to the burst difficult to interpret. She had a few really great days, but I probably made too many changes to her other medication too fast and things went south and then improved again after her other meds stabilized again. So, she did have a positive response, but it wasn't without hiccups. She is now 6 weeks post ivig and doing better and better each day. I know she is far from out of the woods. She's been healthy the whole 6 weeks. She's off all psych meds for the first time in 4 1/2 years. She physically looks healthier than she has in years; no longer pale, her skin looks healthy, her pupils are not constantly dilated like before; she was chronic and probably developed this over 8 years ago. She looked like a sickly kid, but was never sick, no long hx of strep infections, she's a fantastic distance runner, seemingly healthy except for behaviorally. She didn't fit the "published criteria" for PANDAS, probably bcs she's had it so long and at such a young age. I pray her positive response continues. This has been her entire childhood. My best advice would be to beware of the blanket statements.

I hate to even put it down on this thread, but pretty darn good. She's been completely healthy the entire 6 weeks, some weird acne thing flaring and receding in a rapid, odd manor by her hair line, but that is it; good coloring, no livido reticulitis, no skin/nail picking. As far as symptoms, her flares come with excitability (breaded cutlet at the first sight of the waves, jumping and waving arms like a little kid out of nowhere) but they are becoming less and less and less. Her OCD is undetectable right now, just some mild behavior regression and mild learning issues which we have just started to ease back into this week. She's being reasonable and fairly independent with her self help skills. NO psych meds for the first time in 4 1/2 years; that's just unbelievable (I would have had to peel her off the ceiling unmedicated pre-ivig!) No Annoying Orange for over a week!!! Now, if I can just hear her say "Sponge Bob is so immature"....I'll know she's a typical tweeny girl and we've made it! .... her daddy's feelings might be hurt though

Joan, Have you received any feedback from dr. k that re-infection is suspected or does he still feel this response, while agony on your family, is still part of the process that leads to successful treatment? Part of me wishes we were all in our own compound together where we could provide some relief for one another other than virtually. Hang in there, honey!!! Jill

Recent posts have revealed parents with elevated strep titers and other peculiar lab results. Some have speculated having some dormant or asymptomatic or seemingly unrelated infection and living; eating, drinking, bathing, hugging,kissing, ect. in the same home has undermined their PANDAS child's recovery. It seems most are finding these clues after some failure in treatment that should have been more successful. If you were developing a standard protocol for treating a PANDAS child, would you run a standard set of labs on all family members from the beginning? What would you include? Even parents who don't seem to have anything going on at all? In looking at myself, I can't identify anything related, no infections, no allergies... I do exhibit that histamine cascading when I run, but how far do you go looking for indication of a problem? Or is there no choice but to only look further after treatment failure of the child? I remember a similar question asked of Dr. T and he responded something along the lines of.... if you ran 1000 tests 100 would come back positive and most false positives. And where does that Lyme band 41 fit into this? Has anyone out there tested negative for band 41???

Shannon, I could not find strep titers OR Myco-p testing listed on their website. I sent them the following message to see if I could get more info: Hello, I live in PA and would like to get strep titers run on myself, specifically ASO and anti-DNAse B. I don't see those listed anywhere but since your name is AnyLabTest NOW! I thought I'd ask. If this can be done, I'd like to know where and how much does it cost. I would also like to know the reference range the lab uses, so not just positive or negative, but what is the "tilt" measure. Thanks! Perhaps this is something they can do, but don't list because not that many people would be asking for? And I don't want to do it if I can't get a reference range better than "positive or negative." Did I ask the right questions?

My dad was not a great dad for a child; we have a much better relationship as adults. But, he did know enough to get out of my mom's way when they divorced ( i was 2) and let her do what he knew she was better at; parenting a typical child. A child with special needs, well that's a whole other story we all know to well. It's so sad when people get lost in the process of the fight rather than what they are actually fighting for. Perhaps your husband isn't the most mature individual under these circumstances. It must truly be so hard on you to have to choose one love over another. Maybe this thought process can help you cope; when a parent needs to advocate for their child to get services from their school or insurance or any agency, that parent demonstrates their child's needs to make the most powerful case to reach that end. This is basically what you are doing and their is nothing wrong with that. Do your best as you have with so much in parenting this special child to stay goal oriented. You are articulating your child's needs and how those needs are being met. If that happens to be "by mom" over and over and over, thank God he has you on his side. WARRIOR MOM- calm, focused, determined

Vickie, Are you still getting communications from causes? I'm surprised SKIP is having such a hard time. It seems to me the last week of June, SKIP really pushed us back up to #6 when we started to slip. Am I recalling that correctly? So. I've felt faithful especially to them to pay forward, but they just keep slipping. Do you know what's going on with them? Such a shame if they really did prop us up when we needed it most.

Someone from Oakbrook handles the billing and they will make sure they know they are getting paid or they will collect the money from you upfront and you will get reimbursed later. At some point, you will get an email from his office on who and how to contact Oakbrook.

Colleen, Hi! I was curious if you had/have any symptoms at all? I know WorriedDad referred to ongoing sinus issues, but did you have any indications of an ongoing infection? I know there is another thread about a walk-in lab, but I didn't see strep titers on their list of services. Ugh, where does this all end??? Best wishes, Jill

Suspected year of onset by area/region in addition to age.

Stephanie- I can totally relate! I actually scoped out families that looked less than perfect to park our beach gear next to over the weekend.... I figured if I got a moment to people watch, I didn't need to watch the prestine babydoll girls who played so contently to compare to mine who looked like a breaded cutlet before I could even get my flipflops off! She looked insane, but dd10 had a good time, so I can't complain. We must be in the "sensory seeking" camp

My dd had treatment 5/26-27 and had an episode of fever, bad headache and vomiting 12:15am, 6/19; the headaches came and went for the first few weeks, but this was the only vomiting episode 3 weeks post. She experiences a notable shift in symptoms the next day, but the fever and nausea were completely gone. I assumed this was related to ivig since it was so brief.

I'm just curious, with 100 responses why there are decimals and not all whole numbers for #1?

Friends, truly enough cannot be said about the blood, sweat and tears Kelly and Vickie poured into this project. There were many times they were nothing short of cyber-abused by other projects. They kept cool heads, took it in stride and kept moving forward for their kids, for our kids and for those who have yet to make their way to correct diagnosis yet. Kelly, it will be interesting if as a winning applicant you will now be privy to some inside baseball....like how many total votes we received or how many votes separated each finalist; that would be interesting. We are all very confident you and Dr. Cunningham will make maximize the funds clinically and any resulting publicity. KUDOS Ladies

My dd10 does not have low iron/ferritin. It is interesting the pale to healthy coloring is coming and going like the dilated pupils... the pupil dilation is related to brain inflammation, right? That was a great suggestion about the neurosurgeon. My prayers are with you, Joan. I'm so sorry you have this to worry about too.

Court has never had an MRI, so I can't help you out there. We are 1 week behind you w/IVIG and she has always been VERY pale. One of the first things i and others commented on post ivig was how much better her coloring is. However, as the weeks have gone by, the improved coloring comes and goes just like the dilated pupils that were gone immediately following ivig, now they too come and go. Not only has she been very pale, she's had livido reticulitis which is a honeycomb or lace patterning of veins under the surface of the skin... that has totally disappeared post ivig.

When I first heard this song several months ago, it hit home. However, for me, it was my conversation with God and me telling him that even though at one time I was mad when our daughter first became ill, I had come back around but still wanted to know what He wanted from me. While I'm being slightly philosophical, here's what I finally decided was wanted from me (I begin speaking about 4 minutes in, once I've been introduced): http://www.watersedgefrisco.com/video/05232010.php Oh, Deb! What a wonderful spokesperson you are for us all! I can relate to those struggles with faith... what did I do? And, Okay, really, I've had enough now-moments. Way to go on the Pepsi Refresh plug! The flock has heard and responded!! Thanks! Our pastor sent out an e-mail to the whole congregation the day I spoke with a voting link (400-500 members or more) and then sent out another reminder with a long explanation of the illness and a link to vote this past Thursday. I am so grateful that they have been behind us on this! My gut instinct when asked to speak was to say "no" as I don't like public speaking. However, I knew that I was being asked for a purpose and agreed to do so. I'm so grateful to have been given that opportunity! Deb- do you think the flock voted today??? I know #6, we're good...right????

Yes, now vait and vatch the vax and vane of symptoms.... sorry, i mean it in an avectionate vay, teehee.

Uh... Did Dr. K pull out of the OCD conference in Wash DC that day, 7/16? He isn't scheduled til late afternoon, so maybe he's having office visits in the morning? I'd really like to know if he canceled his presentation. Emerson, you are one amazing teenager!

Alex- Anyone in the military can find themselves in harms way in the blink of an eye. Your sacrifice and that of your family contribute to keeping each of us secure. I will say a special prayer for you and your family as my family has the luxury of watching fireworks this Sunday. I'm also voting and crossing my fingers for Tunes for Troops in the 5K!!!!

Pat, I had asked Buster and docs a similar question. One of dd10's worst OCD symptoms was in response to mosquito bites. A mosquito stabs its victim to get their blood. The red, itchy bump is a immune system/histamine response. My dd10 wound scratch them so much she would break the skin resulting in a wound. Then the wound itched her so badly she would pick at the scab and this cycle would go on and on and on.... She ulcerated several of them and has many scars. So, my question to them was could this have not only been a psychological/OCD/brain stuck issue, but also a hyper-histamine response. Both agree this is certainly possible. This has improved GREATLY post ivig which is such a relief! She has gotten several bug bites and NONE of them have resulted in any wounds which is such a HUGE improvement over the last 5 years! Not only that, but her livido reticulitis is gone and the health and color of her skin looks so much better! Even her scars look better. I had never heard that term "histamine cascader"-- but I too get itchy when I run and have bad reactions to bug bites.

Hi Deanna, When dh and I first got married, we lived on Carter Ave off of Harford Rd. We both grew up in Towson, MD. Dr. K said yes to tetanus, but did not go through a laundry list of no's. I heard they are now pushing boys starting age 9 for HPV to prevent genital warts. I'm definitely saying no to HPV.

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