coco

Coco, Ellen, Right now she gets 500mg/kg, too low. She did have 1 gram/kg in May and it caused severe fatigue and headaches for 3 weeks. Coco does your child have side effects from the infusions. I am meeting with my immun on Monday to discuss a higher dose. I believe I will need a consult with Dr. B. Does Dr. B require high strep titers for a confirmation of PANDAS or just SAD and CVID and OCD and chorea? My dd has never had high strep titers but she has a CAM Kinase of 164 and an ANA of 2560. IGG's 493 and every Pnuemoccal was failed. A history of chronic infection low IG4 and low IG1. Plus a C4 that stays very low even after IVIG. Thanks Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point. coco Fortunately my daughter does not get any side effects from that monthly dosage of gamma. I think Dr. B. will be eager to hear about your child's symptoms, and her CamK is certainly pandas, (which he understands well - he had a consult with Dr. Cunningham), and her other blood work would surely qualify her for the high-dose monthly treatment. If she experiences side effects that are too much, I am sure he would start out at a lower dosage and build to a higher one over time as her system gets used to it. coco

Dawn, do you know what city they are meeting in?

Hmm, in a recent note to her followers said that she was "instrumental" in forming the foundation and "agreed" to be the spokesperson.

Yes, maybe in March. I spoke to Diana also and I believe she will try to get Dr. B added to the invitee list, since Dr. Leckman refers him and they speak about patients regularly. The more doctors who believe and treat the better for all our kids! I am excited about them all getting together. Don't you wish we could be flies on the wall?!

It's Beth Maloney's site. I, too, am disappointed there's not much meat on the bones in terms of information. coco

Hi NeverGiveUp - I know that Dr. B does 1 gram per kilo of weight when doing monthly ivig for my dd. I hope that helps/gives you a reference point. coco

So glad to hear you son is doing so much so quickly!! What was the ivig dosage Dr. K used? Was it the same 2-day dose as the first time?

Yes, Dr. B believes that ivig is the best treatment right now for pandas. He will explain the whole B-cell, T-cell antibody process very well to you. We did our first ivig in with Dr. K. in August (2-day, 1.75 grams per kilo) in addition to consulting with Dr. B. We really wanted to have a local doctor we could work with for follow-up treatment and care. He is an absolute winner. After Dr. B went over all our blood work he told us our dd had SAID, Specific Antibody Immune Deficiency after failing 13 or 14 pneumo strep, tetnus, 2 of 4 Iga levels and borderline fail lymes, and he highly recommended monthly ivig. Insurance approved us for 6 treatments so far. The monthly dosage he is using for us is 1.00 grams per kilo, which he considers "high dose" versus "low dose". He also rechecked my dd's blood 6 weeks post the ivig with Dr. K. prior to beginning his treatments, just to see how fast her body was going through that much gamma. She still failed 13 of 14 pneumo streps, some a bit higher, some a bit lower, but fail nonetheless. I am glad we are proceeding with monthly treatments. Additionally he said there are many, many other streps out there that are non-testable, and that those most likely would be failed as well, so it is only smart to build up that immune system at all cost. Granted, viruses are streps evil twin, but ivig will boost the entire system. Also, earlier this summer we were ready for an exorcism in my home, truly. Now, her tics, vocal and motor are about 80-90% gone. Anger, mood lability, sensory aversion is 80% better. OCD, questioning rituals are about 50-60% better. Anxiety episodes ebb and flow, and we seem to have a lot more irrational fears (i.e. afraid of a bracelet) a few days after ivig, then she pops out of it. Her cognitive ability is increased every day, we just had a school meeting this afternoon, and she is really in a good place right now. Her handwriting is amazing, almost perfect, and she had chicken scratch before...always. But not anymore!! She was mis-diagnosed with pdd-nos at age 5, but we now know it is pandas. We have a chance at rescuing her and we are not stopping. I wish you the best of luck with Dr. B. He is terrific! P.S. He told me he reads the forum! Yay!

New ivig brings new antibodies, good ones, but the old ones are still there and they have memory. The healthy ivig gets infused and they have memory. The old bad ones die off eventually and are replaced with the good ivig antibodies, which also have memory. Now there are less bad antibodies to multiply. Then you get another ivig, they introduce more good ones, the good ones get copied again, the bad ones die off, being replaced with healthy antibodies, and so on, until the immune system is functioning and regulating on its own. I hope that makes sense. That's how he explained it to us...but he was much smoother than I am!

Hi BronxMom - We just had a progress appt with Dr. B this morning -- super nice. We are doing monthly ivig for our dd and it seems to be helping...some rough days following the treatment, but then a big upswing. He explained the PEX vs. IVIG the same way to us, that even if you do PEX, you still need to do IVIG. I did ask him about doing IV abx because that really helped my dd 2 years ago. He said that you would really need to do it daily, which is not practical, and if you only did it for one time the benefits are over very quickly. I have to admit I was not convinced of that answer and I will revisit the subject again. What if we did it for 3 days in a row?--I should have asked that. Or, I would like to add in an abx the same time we do each ivig. Sometimes there is so much information in that hour meeting that you have to digest it a bit before you figure out what steps you'd like to take next. Maybe it's just me!!! He did switch us from Zithro to Augmentin, too. However, he is cautious of keeping on the same abx over the long haul due to resistance, so he feels that 3 mos on Zithro, 3 mos on Aug, 3 mos on Omnicef, back to Zithro, etc., is the way to go. Another mom on the forum and I asked him if he could consult with Dr. Cunningham to understand the science behind the long-term abx treatment which he just did...he's getting there, it seems, which is good. Medical school brainwashed too many students to be anti-antibiotics!! He did say, "The consensus seems to be that the long-term treatment is abx." Yee Haw!

Yes! I think the IV abx is DEFINTELY worth a try! As you may know from my prior posts, my dd received high-dose iv abx while she was hospitalized 2 years ago for a URI, and of course we had no idea about pandas...anyway, DRAMATIC difference...all symptoms were GONE. She was "clean" from middle of Feb - end of June. I wish we had put her on prop abx immediately afterwards and we may have avoided the subsequent year and a half of ######. We are talking with out immuno tomorrow about possibly doing it again over the Christmas break. Good Luck!!!

Hi Melanie - glad you met with Dr. T. Hopefully the insurance will work out for you. What abx did he put you on and what dosage? How much does your son weigh? Did he give you an indication of the length of time your son would be on them? I am meeting with our immuno tomorrow and I'd like to pass on the info. Tx. coco

Our immuno, Dr. Bouboulis has explained to us that even after you do PEX, you would still need to follow-up and do IVIG to introduce good antibodies, most likely monthly. I would probably pursue that.

I contacted the producer of the Today show a few days prior to the airing of the Saving Sammy segment and urged her to contact Jim Leckman and Yale or Denis Bouboulis -- to have either of them on the show with the Pandas story, since they are both local driving distance. I also emailed Leckman and Bouboulis with the producers contact info and urged them to try and "put some meat on the bones" to have more of a well-rounded impact. Maybe Snyderman and Leckman ended up speaking after all and he was able to "sway" her thinking, somewhat. I have never been a fan of hers, personally. She always seems to be so much on the side of big pharma and suspicious of other alternatives. Just my opinion. Coco

Hi LovingMJ, hug back at you. yes, all of these moms and dads on the forum are awesome. And we all have had exploding heads. In fact, mine has exploded on more than one occasion! Seriously, you will help your child through this. It is a journey, no doubt, but follow the lead of a good doctor who believes in Pandas, trust your gut and try not to agonize. There is hope and many children have recovered! Read the pandasnetwork site until you know it like that back of your hand, check in with all of the folks here and know help and a hug is a click away! Coco

I would also add that if your "mommy gut" is telling you something is not right, LISTEN, don't let doctors brush it off or say it will pass...if you feel like you're selling yourself on their replies, move on. Your instincts are always best. I wish I had been more assertive when my dd was 2 and things were a bit "off" -- beat it early and find the best doctor. Get a complete immuno workup. Everyone on this forum is here to support you! HUG! Coco

Buster, you bring up a very interesting point...do you have any other thoughts regarding IVIG dosage amount? Swedo recommended 2.0 grams over 2 days, Dr. K does 1.75 grams over 2 days...now, my dd immuno is giving 200 mgs monthly, as she has SAID in addition to Pandas. My husband and I question the dosage, is it enough? After we did IVIG with Dr. K. 6 weeks post we had her pneumo strep 14 strain tested, as her immuno told us it would give us an idea how quickly she is going through the gamma. She still failed 13 of 14 serotypes, some only slightly better, others worse than prior ivig. I was thinking of asking Dr. to up the gamma...any thoughts on that? Does anyone else know what their monthly ivig dosages are if their kids are receiving monthly treatments? Thanks so much! Coco

I would be interested to hear what Dr. K. says about IV ABX. I am also going to ask my immunologist about it this week. I think you can't beat the fastpath that IV abx has, as opposed to weeks and weeks of high dose oral. Maybe do 3-4 days of IV and then followup with lose dose until forever.

I just wanted to post this because bronxmom brought up something I have been thinking about a lot: IV antibiotics. The reason I mention it is because almost 2 years ago my dd was hospitalized as a result of a seizure. At the time she had been battling a horrible URI for almost 6 weeks. I thought she might die. ALL the docs we saw said it was viral...wait it out, keep her hydrated, humidifier, benedryl....no success, she just kept getting worse. Anyway, this was all pre-pandas diagnosis/awareness on our part, but she had this for years (we now know.) Well, in the hospital I pitched a mommy-fit and demanded IV ABX because I thought I might actually lose her. They did. For almost 4 days straight. The response was miraculous. Truly. It's like a magic wand was waved over her. She got better, fast, and all her "symptoms - OCD, tics, anxiety..." gone. The teachers at school said she was picking up learning concepts introduced on a Monday, and by Friday she had mastered them, which used to take months. She was happy, carefree, like Laura Ingall's running through the meadow!! Then, 4-5 months later, we lost it all. And within a year we were ready for an exorcism. Just wanted to share that. There is something to IV abx, I saw it with my own eyes. (BTW - they never figured out what she "had" -- all those "brain-e-aks" at Children's hospital came up dry.) coco

Madeline Cunningham came to my mind first...after all, she's got so much credibility with the development of the test. The tag line needs to be somthing that scares parents, like, "What You Don't Know About Strep Can Drive Your Child Crazy."

I also believe that our daughter has had this for 7+ years beginning at around age 2, ended up getting a pdd-nos, co-morbid anxiety disorder at age 5. We disagreed, but who was there to help, and believe me we searched!! Anyway, Dr. K believes that it is possible she's had it for years. She now 9 and finally getting the help she deserves. His thought is that whether you've had it for one year or several or more, the road back is the same. I am not so sure when you get into 5+, but I'd love to be totally wrong!! I would be interested in hearing about how other kids who have battled this for many years are fairing with the treatments. Is it a longer road back because of the length of the untreated infection? There is another topic on the forum entitled Dr Goldberg. I listened to an interesting interview he gave (sounds very recent) regarding diagnosis of NIDS, autism, pddnos, adhd, and the immuno connection. Very interesting and I learned a lot. If you google "NIDS Interview with Dr. Goldberg" you can listen, it's about an hour. coco

Michael J. Goldberg, Cedars Sinai

Paula, we too have noticed that when dd gets a fever, symptoms completely disappear. Her IGG1 level is also very low. I would love to learn more. I am now wondering if anti-fungals can play an equal role with abx/ivig/pex in treating this monster.

Hi, we have not done a PET scan with our daughter because of suspected pandas. Dr. K told us that this type of brain inflammation will almost never show up on a PET scan because it lies within the basal ganglia and is so difficult to find. I woiuld not rule out pandas based on that test. Have you done the steroid burst? I would also suggest long-term abx, augmentin or azithro, and maybe find an immunologist if your pediatrician is not going to help you out.