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Hi Amy, thanks for replying-- I don't know personally who had the IVIG in Walnut Creek, I read it somewhere. My DAN in So. CA. said he consulted with a So. CA Kaiser Dr., and was able to get an IVIG approved through Kaiser. Believe me, I have no blinders on when it comes to them, and in fact, have been told the exact same thing as you 2 years ago when I went to them for Sensory Processing Disorder for my dd5: 'We can't help your daughter, we don't believe in this.' I am waiting for my CAM results, but based on her fitting PANDAS description to a 'T', (our DAN has clinically dx'd her with it) and what we've seen this last month on daily Azith., and ibuprofen (amazing gains in social anxiety, much shorter durations of rage/tourette type episodes) well...I think she does/will need an IVIG- this has been going on a long time. I am going to call Coram center close to me, try to get a pricing idea, and actually might apply to the Yale study-- Thank you again, and I am thrilled you son is doing well :-) Sarah & Samantha 5

I didn't know- thank you- good info.

AMYJOY: May I ask? I am also in CA with Kaiser insurance. My DAN! told me he worked with a SO. CA Kaiser Dr. who was able to approve IVIG- and I have heard of 1 IVIG being done at a Kaiser hospital in Walnut Creek. I am waiting for my CAM test to come back, and then go make my case to Kaiser. Any tips for me? I'm very sorry to hear you did not get help from them- tho, not surprised. :-( Glad to hear your son is doing well! Sarah & Samantha 5

Hope you get home soon--hang in there-

Wow, how wonderful of you- makes me think maybe I should go with Dr. L to hang out on your beautiful property and become friends :-) I wish I could see Dr. L Right now I am hoping and praying that when our CAM results come in, and if it's a yes (about 90% sure it will be) I can take it to our insurance out here in CA for some help....also have a CA DAN! Dr. but...y'know, not sure how to go forward right now. TomasMom, hope you get in today...

Forever! Just kidding, I am waiting myself, they got caught behind- could be 3-4 weeks-- I am hoping for mine next week- next week will be 3 weeks since they received it.

Well, I've tried to get other neurological dx's, because I had no idea what was going on. Went to a child psychologist, he told me it was my parenting (yeah, I have 2 other children, I'm older, I KNEW it wasn't my parenting!) Went to an autism clinic through my insurance, 3 hour evaluation by experts, they said: 'She is not on the autism spectrum, we see mild social anxiety, and some selective mutism.' When I asked about her breakdowns/rages, they shrugged and said: panic attacks? Went to an Occupational Therapist who specialized Sensory, we did 10 months of Sensory OT. Our CAM test should be back next week. We have had debilitating OCD come and go, other OCD's that stay (clothing) separation anxiety to the max, on and on. She was exposed to strep as an infant in daycare, had abnormal head growth, unexplained and untreated fevers. Documented strep at 2 1/2, treated, but things got very, very tough from there. I'm in the beginning, and waiting, waiting, waiting for this CAM test, but if it is PANDAS/PITAND, I will say this is ALL of her issues, in addition to leaky gut issues (from inflammation?) We are on Azith. and ibuprofen daily, 20 days or so into it...seeing relief, social anxiety markedly decreased at kindergarten, much, much shorter rage/uncontrolable with her body episodes, but I'm not sure what true baseline looks like- Sarah & Samantha 5

Browneyesmom: Well, I'll be calling Dr. K: his website says 1 IVIG and I'll be done! just kidding, just kidding- hope I don't get in trouble for that. On a serious note, I have been following your posts about your daughter- I'll be thinking of you, sending prayers------ Sarah

Ohhhh nooo. Well, Dr. B may want to update his website? His case studies, all 4 of them, indicate 1 IVIG, with antibiotics following, and complete remission for the year follow up. *sigh* I don't know. We have Kaiser health insurance (CA) we should get our Cunninham test back soon, I will take a copy up there, and present a case for help. I don't think Dr. B has cases on his website. Perhaps you are thinking of Dr. K? I am a complete dork. YES, SORRY, it was Dr. K's website! whew- I'm a little confused following the expert Dr.'s here.

Ohhhh nooo. Well, Dr. B may want to update his website? His case studies, all 4 of them, indicate 1 IVIG, with antibiotics following, and complete remission for the year follow up. *sigh* I don't know. We have Kaiser health insurance (CA) we should get our Cunninham test back soon, I will take a copy up there, and present a case for help.

Well, I'm planning on calling the office tomorrow- to get a feel for cost, their thoughts on the IVIG- the DAN! we are working with (he does treat some PANDAS patients) told me HE thinks IVIG's are every 21 days, for years! Freaked me out. No way we can do that. I would love to hear how your experience goes...sending you good thoughts! Sarah & Samantha 5

Wow! Thank you for posting!

Seriously, I've come home. I have found the mothership to our planet (this place.) My dd5's OCD with clothing can be a moving target. Months of NO long sleeve shirts, only certain (maybe...3?) short sleeve shirts, me cutting sleeves off of long sleeve shirts, THEN, only certain colors, to suddenly, 3 layered long sleeved shirts at one time, followed by, the same 2 sweatshirts only - (started school this year with the SAME outfit worn EVERY day for 14 days straight- I washed it nightly, I just wanted her to be able to deal with Kindergarten- as you all know, at the time, these clothing 'interuptions' can cause complete nervous breakdowns. Yes, I have run out and tried to duplicate- not successfully at times (seasons change, sold out) I know you've got the same white shirt- can you search online and buy a few? What I do now? Hide what she has worn so she can't pull it out of the dirty laundry. I laid it down- I WILL NOT wash EVERY day the same things- yeah, it was brutal. So, she has some rotational stuff she is now doing---all the same brand, we have found GAP outlet soft items acceptable. BUT, I have to hide clothes out of sight until next washing (now down to every 4ish days)

Funny, I dropped my dd5 at her afternoon Kindy class today, and the teacher pulled me aside and said: "Since we've come back from Christmas break, she is really doing great! She seems more...comfortable here. She acted out a part in a skit in front of the class, said her lines, has asked to play/join in with other kids, her reading/sounding out is great..." The ONLY thing different I've done with Samantha EVERY day since Christmas break? DAILY ANTIBIOTICS. (We just started them for the first time, ever, December 31st. They went back to school January 3rd.) What a trip. Sarah & Samantha 5

Totally! I put my dd5 in part time preschool early (because of seperation anxiety) so she's been in part-time school (now K) for 4 years- and has NEVER had a rage there- never hit, etc. Different at home! Her school work has also always been well- altho. she used to have performance anxiety. It's better now. But, her anxiety is there for sure- 1st year, she could only talk in a whisper in the class- that all has gotten better, but, she chews sleeves as soon as we get there now, and is 'shy' quiet- but now is able to talk normally, raise her hand, etc. Steph., my IL's live in the same town- I could never let them 'take' her, or leave her over there without me (seperation anxiety too great) it does take her a good 15-20 minutes to speak to them after we get there. I've got a neurotypical 3 yr. old, and the difference is grand at times, but my MIL, I know, still thinks I'm off my rocker. I guess it's her own form of denial, or she's just not capable of grasping it, I don't know, but I've learned to let it slide, because it used to make me nuts, I took it personally. "Walking on glass" Perfect, no kidding. Sarah & Samantha 5

To me, that is a great OAT! You can call Great Plains, and they give you a free consult on the test w/ a specialist/nurse. That yeast marker does not seem too high to me at all.... Nice!

I am awaiting our CAM results, but, the DAN! Dr. we have been working with (just for 3 months now) said to me yesterday, 'She fits PANDAS to a 'T'! I am about 90% there, but I do need to see the CAM results. I have always been one to like testing to help me get a clearer picture of what is happening in the body. Also, w/ the test, I will make a copy of that, along with something from our DAN! to present it to our insurance Dr.'s (whom I gave up a long time ago to try and help my dd5) and demand they start helping me. (good luck, right?) But I am draining my retirement account. And by the way, if the test is clearly a No, then I also have a clearer path- and need to take a different direction with her OCD and Anxiety Disorders.

I give my dd5's medications in a flavored liquid form (strawberry) and I use a syringe, and squirt in at the very back side of her mouth, she is sort of forced to swallow it this way. I follow with letting her have a sip off a juice box (which she doesn't get otherwise.) This probably won't be very popular, but, she knows if she doesn't take it, I will actually lay her down on the floor and make her take it :-/ Haven't had to actually do that yet, but I have showed starting to-- y'know, gotta get this stuff down.

I try to give the probiotics at least 2 hours away from the antibiotics- otherwise, I was told, the antibiotics will just kill off the probiotics.

Yes, wow, the information and willingness to help, it's amazing. What an incredible bunch of parents. Mom Love, thanks for asking- you know, we are on and off- but overall, day 10 on Azith., I'd have to say I'm seeing OVERALL 60%-70% improvement- more at the very beginning-so I wait and see, and wait for our Cunningham results. Glad you are moving forward with the Igenex test----sorry things seem to be getting worse---sending you good thoughts--Sarah & Samantha 5

Hi, I'm way, WAY too new to offer any worthy advice, I am in the 'wait' period as well, which is almost unbearable, and I've waited for quite a few things in my life. We tried Omnicef 1st, on it for 7 days, and my intuition and what I was seeing wasn't 'enough', so asked my Dr. for Azith. And I am seeing improvement- I guess a part of me was thinking 'poof!' it'd all be gone! But no. However, the rages are fewer and and much shorter duration, better maturity, better cognitively. I can 'see' something is being waged in her little body. We are only on day 10. There are some bumps, some breakthrough issues- it's not 'poof!' all gone. Better periods, longer better periods, then some steps 'back' to where we were. Also sent in the Cunningham test- I need to see these results-- PANDAS is a huge game changer-- I have been trying to figure out my dd5 for YEARS. I personally think she has been dealing with this a long while, but then I wonder and want to know FOR SURE. I need to be patient! Hope you see wonderful things with Azith. and it helps your little boy-- Sarah & Samantha 5

AH, more tools to try, THANK YOU.

You've had awesome replies (I just ordered Omega fish oil to start back up again) Just wanted to say I had a ds who was an only child his first 7 years...his is neurotypical. He required lots of things to do...at the time, I was constantly buying him Lego sets to build, etc. He was in full daycare/preschool, because I worked back then, but when he was home, yes, there needed to be something going on--TV, stuff to build, park trips, something. After then having 2 little girls close in age, it is very eye opening to see how the 2 interact and 'play' (when not fighting) together ... they can hang at the house together without me having to give projects all the time... but, even with that, my dd5 PANDAS can still get into 'needing more!' Sarah & Samantha 5

Mom love, thank you--- I have 3 kids, ds13 from 1st marriage, remarried later in life, had 2 girls, dd5 Pandas, dd3. So yes, dd5 really takes it out on her little sister/sibling, too. 'She had this, and I don't!' Or, she got there first! She got into the car first! Or, she will terrorize her little sister, scaring, hands like claws, grimace at her... Her rages- you can literally 'see' she is not in control- it starts with hitting, she can't stop, name calling-of course, we have to step in and displine, try to remove her- then she can't control her body- won't be touched- kicking, yelling, spitting, saying 'you're rude!' 'I don't like you!' or something over and over again- she will bang, throw things- just..gone. When if finally ends, it ends with her buried under blankets, crying, so filled with remorse and shame, I have to crawl across to her, try and touch her (sometimes a tight bear hug until her thrashing subsides, and she collapes into me) I hold her, stroke her lightly, say over and over, 'it's okay, it's okay' Bloody heartbreaking. But when in the rage, Good God, we are pushed into yelling at her at times...it's just so horrific. So round and round the guilt, etc. And then of course, you have the spells where she is articulate, sweet, funny, goes off on her own...gives over things to little sister, if little sister cries, she makes her laugh... Snap! Back and forth.