JAG10

Joan, I know this doesn't sound nice, but you have to preserve yourself some so that you can continue to fight for him. It sounds like the noises are driving you batty! I remember when dd10 was a baby, the crying was so intense and relentless I thought I was going to lose my mind! I would look forward to my shower so I wouldn't have to hear it for a little while and then I thought I had really flipped my lid because I thought I could hear a crying sound coming out of the running water!!! I had to play music with headphones on to get away from it for a little while and give myself a break, maybe you could try that? I know that doesn't mean it isn't happening, but you need some time when it isn't "in your face" or ears! Still to this day, when dd10 and dd7 are arguing when I'm driving, I turn the music up so I can't hear them and they can't really argue anymore cause they can't hear each other. I know you feel so badly for him; his pain is your pain doubled. But both of you suffering continuously isn't going to make him suffer less. You must preserve your energy and mental focus to fight. Like when you are on a plane and they tell you to put your own oxygen mask on before you help your children; you are of no use to anybody if you pass out. Put your oxygen mask on first, Joan. Get some help, get some time away. I really believe it is the best thing you can do for your son right now. Jill

I would think it makes a difference because Quest's "tilt" measure is 1360, so they reported the results as >1360 and you don't really know how much over the tilt measure it was. Therefore, it technically looks like the aDNAse B titers rose, but actually they may be falling just like the ASO. Either way, they are very elevated for over a 6 month period of time. Some folks will say how high the titers are makes no difference, but in my experience of seeing 4 PANDAS experts, they all said titers that high are significant.

Is it that he can't swallow pills or won't cooperate cause he doesn't want meds? I've always put my dd meds in applesauce and if I run out, whipped cream. Both my 7 and 10 y.o. have an easier time with pills than the liquids that have a strong taste. I also read in one of your other replies about your lack of a social support system. This is a tricky balance with most folks that don't "live" this craziness like we do. I usually don't say anything to my friends or family unless it is "big news" or they ask. And, frankly, it is nice to have parts of my life that don't involve this, but I'm an SLP and work with kids with special needs all day long, so I have to put effort into it. One of the best gifts someone can give me is a great book suggestion where I can get lost for a little while in someone else's drama! It's not easy to have friends right now, most people just can't relate or they make the BIG mistake of trying to use something trite they learned in psych 101, HA! Is your son in 5th grade? My dd is and as if PANDAS isn't enough, the drama of 5th and 6th grade is enough to make one pull a Thelma and Louise off a cliff! Hang in there; you can always find someone hanging out here who can relate to what may seem like the unthinkable and unbelievable. I know it isn't funny, but I did get a chuckle out of trying to visualize the hockey mask tactic

My dd10 WAS a skin/scab picker before IVIG. Her CBT said it was very similar to trichotillomania and even used some of the same tools. Well the CBT didn't do much but cost a lot of money, but the skin picking is completely gone after one HD IVIG and is the most obvious and noticeable improvement in my dd. She no longer scratches bug bites til they sore and bleed, then picks at the scabs in a similar fashion. She doesn't even pick at her nails or cuticles anymore. It was BAD, she went to the ER twice for ulcerating sores, but since May 2010 IVIG-NOTHING, completely gone and it had been an issue for 4 years.

Hi SM, Oiye! Sounds like you are being literally and figuratively hit from every angle! My girl doesn't rage, so I don't have any nuggets of wisdom there, but I've read others post about peanuts and ibuprofen helping. Hopefully folks will chime in soon. I also don't know the doctors you are referring to, but they don't sound like a good match thus far. I'd keep looking and keep calling until you have a plan and some reasonable answers that make sense to you. When I've felt great despair with this in the past, having a plan of action and options helps me cope, although I'm terrible at waiting and constantly am praying for patience! You are not alone, you're not crazy and you are not a bad parent. Find some super-mom-glue and piece yourself back together. Hopefully your cyber-friends can help you piece together an action plan for the immediate and short term. Jill

Perhaps the "others that are listeners" will have an opportunity to provide feedback prior to submission and articulate the concerns of interpreted limitations regarding antibiotics? We have to wonder once the disorder becomes widely accepted and any treatment at all more mainstream, how much faster will progress in treatments occur?

I am surprised he is still sharing that statistic of 87% only need 1 IVIG or 12-13% need more than one. As others have said, he may be erroneously counting folks as "in remission or cured" who he doesn't hear from anymore. There could be several reasons why those folks need to move on to other docs for further treatment including location to him, his success acquiring insurance approval, families financial experiences with his treatment facility OBSC, and possibly other reasons. While I have tremendous respect and admiration for Dr. K (I think he is a hero), I don't believe this number reflects what is implied. I don't think he's being dishonest, I just think he should say "87% of my patients see me for 1 IVIG and I do not know of that number who seek additional IVIG elsewhere and who acquire an asymptomatic state with my one treatment."

Lesson learned. At this point in time, you need to preserve your energy and emotion on getting your dd well. Maybe in the future when she is better and this train we are all on has gathered even more steam, you can go back and enlighten people. For now, it is all about dd and somehow you will make the best of it while in CT. Perhaps, you can swing by NYC and see the tree in Rockefellar Center or something. But you have an appointment with a doctor who you won't need to convince, but will convince you your dd's condition is MEDICAL and needs medical intervention. Many, many of us how found ourselves here bcs the psych meds didn't work, instead they result in behavioral activation. If they worked, we probably would be carrying on with life, right? But our children's bodies were telling us, NO-SOMETHING IS STILL WRONG HERE-KEEP LOOKING!!!!! We've all been made to look crazy ourselves here. You get these MDs and psychs who look at you and you can just see them writing in their notes "apples:trees" but your kid isn't crazy and neither are you! If you have the financial means to go to an expert, go. Save the wear and tear on your soul cause you're gonna need it. It is a long, bumpy ride. I'm truly impressed by pediatric psychologists and psychiatrists who believe in PANDAS and are willing to step outside the psychotropic drug realm. Think about it...they will need to get on board and learn a new approach to their practice.... otherwise they will go from being in high demand to obsolete.

Fantastic collection, Vickie! Wouldn't it be nice if the "white paper" could be added to the 2010 accomplishments??? Just like everything else about this disorder, it's taking so much longer than we thought it would, huh?

WOM-This post does pay it forward. Some other "worn out mom" will read this and start to cry as she reads her own child's story in your words, only it will be where your child was and where she hopes her child can be some day too. God bless you for your patience and faith and I hope you feel a little less worn out than you did a year ago.

Dh has dd7 at dermatologist this morning for molluscum. She got it on a cruise ship in August and they have only spread from between her thighs to in between her buttocks cheeks. We'll see what they say.

Did he say it would be a "one time" booster or an ongoing booster?

ADHD is not one of the 14 disability categories recognized; it would be OHI (Other Heath Impaired) which would be the same category for PANDAS without all the drama, confused expressions or eye rolling.

Seems to be a good number for us.....we've hit 50,000 replies.....50,000 for Dr. C's research.....what will the next 50K be? I'm just so grateful I found this place about a year ago. With the information and camaraderie found here, my daughter has improved so much this past year. We feel hope instead of despair, connection more than confusion, persistence instead of pessimism. There are so many bright, tenacious parents here and tendentious at times, with a common goal of obtaining optimum health for their children. Thanks PANDAS parents!

I would concur with WorriedDad; my PANDAS dd10 was completely unable to participate in CBT in any meaningful way. Even the therapist recognized this and we agreed to discontinue after 4-5 sessions; another small fortune later... Interesting choice of words "brain on fire" WD. When she was 7, before we knew she was PANDAS, we took her to the Amen Clinic in Reston, VA where they did a SPECT scan of her brain and determined she had "Ring of Fire" ADD, which is basically every dx wrapped into one; ADHD, OCD, Mood/Bipolar....but basically the scan showed her whole brain was over-activated.

When you get a "high" when you score abx or steroids for your kids When you look forward to a specialist's appt more than any date, event, sale or sex When you would drive or fly halfway across the country to see a pediatrician from Croatia When waiting for the other shoe to drop becomes a way of life

I'm checking that out right now. He has had tons of episodes of unstoppable nausea, and I asked his pediatrician yesterday if maybe this was a chronic problem, not acute. She wasn't sure. I am also planning to take him to the hospital for probable admittance today if the pain doesn't ease up. His neck is stiff (but when I push, he gets chorea in it), and he has been fighting a very low grade fever since yesterday. The pediatrician put him on a completely liquid diet, and the child is miserable. But, I'm going to spend a few minute checking out this autoimmune issue, before I head out for 2 hours of work (after which I check back with him, and if he's still not well...) I'll forward whatever I find to the pediatrician, and see what he has to say about it. Interestingly, he was on steroids 2 days prior to 2 days after IVIG, and it was after that that the symptoms came on. He felt GREAT until then. Trudy-Your boys are unfortunate to have these health challenges, but sooooo fortunate to have a phenomenal, bright, persistent mom like you!!! What a blessing your are to those young men!!!

YIPPPEEEE!!!! Okay, question.... So, some kiddos immediately get worse after IVIG for a few weeks, flipping pages, herxing, whatever you want to call it. Some kiddos don't, some kids get better right away and it lasts for a few weeks and either continue to improve or then have up and down bumps a few weeks later, plateau, slide with immune challenges, ect. Do you think the ones that see immediate, noticeable improvement that lasts a few weeks...do you think those kids don't have the underlying infection going on? But more auto-immune and need a more consistent level of immunoglobulin to maintain their improvements? I'm saying...if you pre-ivig eradicated the infection and that is when you saw the flipping/herxing behaviors, then post IVIG saw improvements without further "worsening" of any symptoms, would that lead you to believe the infections could be gone and you are dealing with a remaining auto-immune component? I know some of you out there don't believe there is an auto-immune component without infection; noted. This question is for those who believe you can have auto-immune dysfunction even after you have eradicated all infections in the child.

What I wouldn't give to see those beautiful, hazel eyes again and not all blacked out! We're taking her to see Dr. B a week from Monday, but her labs already came back; low IgG (720), low IgA (46), high C3D (27), failed all the s. pneum serotypes. All the Celiac tests were fine, Gliadin-fine, Vit D-fine, IgeneX not back yet. We can't keep paying out of pocket for everything, gotta get some coverage!!! I work for a school district; I'm supposed to have one of those Cadelac plans for crying out loud!!!!

Holly, You and your dd are in my prayers. You are armed with faith and knowledge to see your family through this!

Thank you so much for sharing your experience! Maybe the age plays a role in the frequency? My dd will be 11 next month, looks pale, pupils still widely dilated, eye area looks sickly, although the livido reticulitis has not yet returned and it has been 6 months since her HD ivig. NGU-Does/has your dd had issues with acne and, if so, have you noticed any difference since beginning the routine ivig regimen?

I've heard a couple of families reporting that "middle dose" with more frequency (how often are you doing the .9g/kg?) is showing great promise and results. Do you mind sharing if there are certain levels/blood markers you are looking to reach to guide you with regards to frequency and duration? I believe NGU is watching total IgG to be in the upper limit and some of Cunningham's levels. Also, do you think that this approach applies more to the group of PANDAS kiddos, who have been fighting this for several years, perhaps, pre-teen/pubescent age range, and also show immune deficiency (probably for same reason)? I know this isn't a newsflash, but it just seems the pivotal piece in treatment course is when the condition is recognized and treated or how long it goes unrecognized &/or mis/not treated.

My pandas dd is in 5th grade and has to chose her saint this weekend for confirmation preparation. She was going to choose St. Blaise, patron saint of sore throats......of course, dd never had sore throats, perhaps if she had it wouldn't have taken us 6 years to figure this out!!! We'll read about St. Therese before making the final decision. Thanks! Our younger dd has her First Holy Communion this Saturday.......she came home from school with no voice and her best friend was out with strep Mon and Tues. God bless all of you wonderful parents and your families!

Kristie, I will add that when I dealt with your ENT and we scheduled the T & A, he let me know I could cancel or postpone scheduling it, just let him know. So, I wouldn't be afraid you'll "miss your chance" if you don't do it tomorrow. He'll understand.

Oh Tpotter, I'm so happy for your family!!!! All these great user-names fit you...Tenacity and NeverGiveUp; it is about time that insurance company paid up!! I'm going to be battling with our same friends soon. Dd has the immune deficient labs, but not the documented illnesses to go with it, so maybe we'll get lucky or someone will have mercy on her little soul.