pandas mom

It's great that so many people are getting involved with the effort. John Scibak is sponsoring the bill. The following are registered co-sponsers as of the filing deadline in January. John W. Scibak 2nd Hampshire Peter V. Kocot 1st Hampshire John D. Keenan 7th Essex Stanley C. Rosenberg Hampshire, Franklin and Worcester Ellen Story 3rd Hampshire Josh S. Cutler 6th Plymouth Garrett J. Bradley 3rd Plymouth James M. Cantwell 4th Plymouth Thomas J. Calter 12th Plymouth Sal N. DiDomenico Middlesex and Suffolk Carolyn C. Dykema 8th Middlesex Walter F. Timilty 7th Norfolk James M. Murphy 4th Norfolk Rhonda Nyman 5th Plymouth Karen E. Spilka Second Middlesex and Norfolk John J. Lawn, Jr. 10th Middlesex Marjorie C. Decker 25th Middlesex Steven M. Walsh 11th Essex We have been communicating with the Committee's to which we've been assigned for the two bills to determine our hearing date. We have filed for the 2013(14) Legislative Session so we may not get a hearing until next year. However, we have been told that we will have less than two weeks notice between the the scheduling of our hearing date and the actual hearing. So we need to make sure that we have all of our resources at the ready. Hopefully, we will be able to get these bills passed! We will post any information as this unfolds. Thanks everyone! Heather and Jacob

Thank you for all of the suggestions. We're going to give this medication a few more days and see how it goes. We're working with a naturopath, too, so I'm going to check in with her about zinc. Thanks- I'll keep you posted!

My DD7 started strattera 18mg this week. As a result of antibiotics and IVIg, we are enjoying a period free of anxiety, tics, OCD...However, impulsivity, memory, and attention issues still exist. We consulted with our neurologist and Dr. Murphy about starting medication to address these issues. She's come so far, but she's still working too hard to feel okay. We started a few days ago, and she's been irritable and moody (marked difference from the happy girl we usually have). I've been told to give it time to adjust. After the horrible mood swings she endured before she improved with IVIg, I can't believe I invited this back into the house. We started the meds. with good intentions. I'm wondering if anyone else has experienced this side effect after initiation of stratttera? Thanks!

Bumping up for my husband "moving forward". Thank you to everyone who helped and sent good energy to MA:)

I apologize if this results in a double-posting... Hi The deadline for co-sponsoring Representative John Scibak’s PANDAS/PANS legislation is fast approaching (Friday at 5PM). The following Legislators have co-sponsored Representative Scibak’s bill. Rep. John Keenan (Salem) Rep. Peter Kocot (Northampton) Rep. Ellen Story (Amherst) Senator Stan Rosenberg The following is a link to names, email addresses, and phone numbers for members of the Massachusetts House of Representatives. Please feel free to call the above legislators to thank them for their support, but more importantly make sure you call the other representatives that have not yet signed onto the bill. While I have been told that there is no direct correlation between co-sponsor numbers and the final disposition of a bill, every additional legislator that signs on is one more informed politician that will help us to build the momentum to put the control of our children’s medical treatments back in the hands of our dedicated PANDAS doctors and out of the reach of insurance companies. http://www.malegislature.gov/people/house If you are interested in having your friends, family, or colleagues write a quick email to their local representative, feel free to use/tweak the following template letter. However, I have found that a phone call is a much more powerful tool. Ask to speak to the Legislative Director or the staffer that handles health-care related issues. Thanks for your support. jacob Dear Representative __________ Representative John Scibak of the Second Hampshire District has filed the following bills for the upcoming legislative session. These bills address children affected by PANDAS (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus infections) and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome). House Docket #3192 An Act designating PANDAS/PANS Awareness Day House Docket #2669 An Act relative to insurance coverage for PANDAS/PANS I would greatly appreciate your co-sponsorship of these important bills. By co-sponsoring these bills you will help children and their families struggling with this disorder by providing them with the opportunity to pursue the therapeutic recommendations of their doctors. Currently, many of these children are denied access to IVIg (Intravenous Immune Globulin) therapy by insurance companies more concerned with bottom-line profits than providing doctor recommended therapies. Sadly, this creates a situation in which families are forced to choose between their children’s health and financial ruin. According to the National Institutes for Mental Health “PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. The term is used to describe a subset of children and adolescents who have Obsessive Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms worsen following strep infections such as "Strep throat" and Scarlet Fever.” Recent research at NIMH has led to an expansion of the original PANDAS criteria and the subsequent use of the term PANS: “PANS is a newer term used to describe the larger class of acute-onset OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric Syndrome and includes all cases of abrupt onset OCD, not just those associated with streptococcal infections. “ If you would like more information regarding these disorders, please visit the National Institute for Mental Health’s (NIMH) website at http://intramural.nimh.nih.gov/pdn/web.htm Thank you for supporting this important piece of legislation. Sincerely,

Thank you!!!

Our DD 7 has had PANDAS/PANS since 2010. She recovered fully with antibiotics after onset (strep). Second round of illness (shingles, mono, Lyme) left us with IVIg as the treatment of choice by her drs. Harvard Pilgrim declined after months of battles, including two appeals. They declined on the basis that the second exacerbation was not strep related. It was a wretched process- one many of you have endured. We contacted local politicians at the time, and one local representative has filed legislation, which would require Massachusetts insurance companies to pay for IVIg for kids with PANDAS/PANS. It’s a long shot and a lengthy process, but it feels good to at least try. In addition, he has conditioned an act to create an awareness day for PANDAS/PANS. We have only three days to gather support, so here is what his aide has requested: “The best way to gain support at this point is to contact your network of other PANDAS/PANS families and ask them to call their state representatives and senators. Basically the message is - "Rep. Scibak has filed HD3192 and HD2669 and these bills are important to my family for the following reasons. I ask that you considering signing on as a co-sponsor." The deadline to add co-sponsors is 2/1 at 5PM. After that deadline, we wait until the House Clerk assigns every piece of legislation filed to a committee.” Any efforts you could make on the behalf of this legislation would be appreciated. Best, Heather

We've had a lot of difficulty with Harvard Pilgrim, too. They've covered appointments, but not IVIg. Do you have the PPO?

Hi Nancy- Harvard Pilgrim has recently changed their policy. PANDAS is now on the excluded list for IVIg, as the treatment is considered experimental. DD's IgG levels are fine, but Serotypes are not. HPHC saw through all of this, and they are not fighting fair (though I'm beginning to understand that this is the norm). Tufts, though, does not sound like a better option. Maybe BCBS? Thank you so much for replying. It's a big decision, so I'm trying to arm myself with the best information. I hope your daughter is doing well now. We are also going the homeopathic route, too. I'm just getting used to taking the out the credit card- it's like monopoly money:)

We have been battling with Harvard Pilgrim for six months. It's been an exhausting, futile fight. I know many families are familiar with this nonsense. I will gladly switch jobs (I am a teacher) for an insurance co. that will support IVIg for my daughter. United Healthcare does not seem to be very present in MA. I have the opportunity to switch to Tufts if I take a different position. I love my school and job, but I love my daughter more. Any success for CVID or PANDAS diagnosis for IVIg with TUFTS? We've put two on credit card (amazing how credit cards companies will just increase the limit...) but we are at the end of our ability to do this. Appreciate any advice or feedback. Thanks so much. I could also decrease the time at my current job, so I lose my insurance- we'd then default to my husband's insurance which is BCBS MA.

Thank you for all of your responses. My instinct tells me to pursue 1-2 more treatments and put some necessary supports around her (thanks, LLM). I'm afraid if we don't follow through with this plan, then we might not be sure about the effectiveness of IVIg for our girl. Dr. B had warned that some kids really struggle between the first two treatments. I guess I just chose to hear what I wanted to hear and be hopeful. Thank you again!!!

Thank you!!! I needed to hear that from someone. Next appt. with lyme dr. is just after next IVIG, so maybe he can recommend something new if she continues to decline. Glad to hear your son is doing better!!

Which doctor is doing the IVIG? Also, get a copy of insurance company's policy on IVIG coverage (they have to have a policy on what is covered.) I got that list, and found one of the conditions listed that my son had. BUT (and this is important), there were specific stipulations that had to be followed (e.g., I had to prove just how sick he had been from it, how it limited him, etc.) I followed the stipulations exactly (showed how sick he had been by getting the pediatricians visit records for the past 1/2 year, and found that he had been treated 8 times in 1/2 a year for bacterial infections, and that he had missed excessive days of school for the past few years (I included the attendance records that I had kept.) That's the best piece of advice I can give. We had it coded as specific autoimmune deficiency (SAD) instead of PANDAS, so I don't know if that helps, but he did qualify in the end (took a lot of fighting, and followup.) Good luck. I'll keep my fingers crossed for you. Dr. B. is the doctor. We were able to document (with help from our pediatrician) all of our daughter's illness, but it didn't seem to matter. The only thing that mattered was that the exacerbation was not due to strep- shingles, this time. We are not giving up, though:) Thank you for the ideas- we'll likely be switching insurance companies, so I'll tuck this idea in my pocket and use it for next time!

My DD 6 (birthday tomorrow) had IVIG 6 weeks ago. She is ten times worse than before IVIG. Please let me know if your child has experienced this, too. My instinct tells me to keep going for a few more rounds. If we stop, then we'll never know if it would have helped our girl. She is due for her next treatment in two weeks, and I would be so appreciative if anyone could share like stories. Do you have a child that got significantly worse before he/she got better? Lyme and mycoplasma are also factors but both have been actively addressed for months. Also, Harvard Pilgrim has denied coverage, so we are using any resource we can think of to fight the insurance company. Thanks to those who have shared strategies for appeal. Thank you for any words of wisdom--