nicklemama

My son is compound heterozygous. I cannot say that treating has done anything huge. We've been at it for 18 months. Initially, he was better. Eight months later, he caught pneumonia, had an exacerbation and had IVIG # 2. It has not stopped him from flaring either. We have stopped the B12 injections after a year and finding his B12 was through the roof high. Started giving him B 12 through a cream developed by Dr Kendall Stewart twice a day. Have since discovered giving the second dose of cream in the late afternoon was making him cranky and difficult in the evening. His new doctor told me too. Much B12 can cause agitation and anger. She's right. All in all, I'm not sure what is exactly helping because we started him on enhansa, iron supplementation for extremely low ferritin levels , started treating ehrlichia and anaplasma with biaxin and augmentin and now he's doing really well. Had a cold last week and flared a little but that seems to be resolving itself. He told me yesterday "Mom, I'm really sensitive and I'm going to try to not be so sensitive anymore". Well, well see how that goes but it's a start. He's 9 and starting to recognize and verbalize more about PANS. We've been at that is 4 years. It's probably helping but it's not been a panacea.

How old is your son and how old was he when he was diagnosed BP? You'll have to excuse me but I'm going to say it outright, I am very suspicious of early onset bipolar diagnoses. My son was thought to have bipolar at age 6(started at age 5) and it turned out he has PANS instead. Treatment for PANS has resolved all of the behaviors that were attributed to BP. There are many of us here on this board with similar stories.

Yikes is right. That's how much my sons rx would be without prescription coverage.

I took an OTC curcumin for a yr for my RA and it did nothing. I went off it and didn't notice a thing. I have not tried Enhansa but I put my son on it about 4 months ago and I've been able to get him completely off Motrin. He was needing Motrin daily for anger/irritability. His doc wrote a script and I get a months supply of 600mg twice a day for $15 plus shipping. Our insurance covers it. Have you checked to see if your prescription coverage will cover it?

I read there is no Marriott shuttle.

Wow, this gives me hope. DS son is nearly 10. He's doing well but not 100%. Has a cold right now and we are seeing moodiness. Like LLM says, most who have kids who've outgrown it are no longer on this message board.

Thanks. I don't know what they could offer him in an IEP. He doesn't need services. He actually functions pretty well at school. They told me yesterday he does not stick out in a crowd and they've got tons of kids who need accommodations very similar to his. If he's going to have a problem, it happens during unstructured time like lunch, recess, bus, walking in line. My friend, who is a special ed teacher, told me and it was my understanding by reading online that IEPs are for academic issues and 504s are for accommodations for medical conditions. I was told he was the only one with PANDAS in his school. I politely informed them there were others unidentified. His school should have approx 15 PANS kids based on enrollment. I told them their EI class probably most certainly had a few, along with kids with tics, bipolar, other difficult kids and some like our son, who might be flying under the radar and their parents either haven't disclosed it or are having trouble at home and are unaware of what's wrong.

My son has actually never had issues at school other than having trouble with a couple of kids. He is easily bullied and has a hard time around kids with ADHD that don't know boundaries. The school has known about his illness since first grade (now in 4th)and I send info and talk to his new teacher every year. They've been proactive and we have just formalized things with a meeting. It came about when his new teacher held him back from recess last week for forgetting his spelling homework. Also, I wanted a letter sent home to classmates and the principal balked so we felt a meeting was in order. It lasted an hour and we both came away very impressed.

Timing is everything. My dh and I had a meeting with the school principal, resource teacher and classroom teacher today. My son performs above grade level, so no IEP needed. Over the 3 yrs of his diagnosis, I have kept the school apprised of PANS by giving them appropriate publications and talking with his teacher and the principal. Today was the first time we've sat down together since his diagnosis in 1st grade. He's older now and the expectations are increasing but his emotional/ social development is still lagging some and it becomes more apparent plus he does have some executive functioning issues like remembering his lunch bag, turning in papers ,etc... We explained to them how things have been going, treatments, etc....and asked for some accommodations. We found out a great deal about our son and what accommodations have been out into place automatically without our formal request. We are lucky our school is so proactive. Here are the things we asked for and were granted today 1- alert letter sent home to each classmates parent 2- reminders of frequent hand sanitizing ( we asked for just our son but it's going to apply for every kid) 3- daily sanitizing of his desk and the desk in the adjacent room where he receives science instruction from another teacher) 4- allowance for fidgeting (found out every classroom now has fidget toys and every teacher received instruction on use) 5- develop and implement a hand signal for distress with classroom teacher 6- designate a safe place to go when signal is given 7- no loss of recess or PE for behavioral or academic infractions 8- seating away from high energy/distracting students( they cause his anxiety to ramp) 9- allowance for excessive absence (found out this has already been implemented, I wondered why I never got the letters last year, principal withheld them) 10- parental input on teacher selection We talked about future possible needs such as when the hand writing requirements increase and a few other things.

Airfare from Michigan directly to Providence wasn't too bad, actually. I watched rates and they dropped $80 from a Tues to a Wed and I booked my ticket.

I'm going and I hope to meet many parents from this forum!

We had quite a few great conversations with the pediatricians who stopped by the table. Most are on our side but don't know where to start. Lucky for them we had information in some beautifully printed folders done by Kristen B. We had a few conversations with a couple of buttheads but they were few and far between. Talked to quite a number of med students. I'm getting old because they all looked like they were in junior high, lol. I'm manning a table next month at a local conference for kids with issues like ASD, ADHD, etc... Kristen had a great table banner printed up that we've been using. It's all very professional looking. We provided some info from the Moleculera website. I spoke with Dr. Shimasaki on the phone last week for his permission. He's a super nice guy.

Doing a little outreach and advocacy this weekend with fellow warrior moms from the Michigan/GreatLakes PANDAS/PANS group. Our ringleader manager to secure a table as an exhibitor at the Michigan Chapter of the American Academy of Pediatric conference today and tomorrow in Grand Rapids. We will be trying to reach out to the pediatricians in attendance.

I'm not offended at all. Ophelia, believe it or not, I actually very much do understand the feelings. You have a different perspective than most parents here but imagine having a very sick, dysfunctional child and you can't get ahold of the doctor. This disease has sickened me through the very stress of dealing with my son added to the stress of trying desperately to find help. My point is every one of these very few doctors have their positives and negatives. The two I've had personal experience with have office staffs that need some serious training. I imagine though, they burn out after a while dealing with all the stressed out parents of very sick children. I don't have unlimited resources to check out local doctors but I kept at it. My current doctor does not take insurance. It seems out of the box thinking doctors don't deal well with square box insurance companies. My local doctor does not take insurance but she charges a fraction of what the big names charge and I get 60% back when I file my out of network claims, less than what I pay in deductible for the the big names. I also get abx when I call her office for refills on the same day, unless she's out of the office. I sent all the doctors my son sees or has seen the flyer and schedule of speakers for the NE PANDAS conference. One day, maybe the light bulb will come on for a few of them.

Can't help but wonder if this company is somehow contacted to Ranbaxy, another Indian company who has been in trouble.

LLM- I learn something new every day. My son eats peanut butter nearly every day. I keep thinking he will get sick of it. Hmmmmm..... It's the dopamine thing. Maybe I'll give phosphatyidalserine a try.

Herein lies the problem.....too many kids with PANS, too few doctors who know how / are willing to treat. They get overwhelmed with patients. Dr T tries to see everyone quickly. You must wait months to see a couple of the others. None of the others are available for the volume of phone consults as Dr T. He takes on too much, out of the goodness of his heart. His office staff leave something to be desired, as we've heard and I've heard similar complaints about the other's staff. We all need doctors available now due to the nature of our children's illness. There aren't enough docs to go around and have it now, unfortunately. I encourage every one to continue to search locally for help. It has taken me three years and many dead ends, but I finally found someone willing. Now I'm not under even more additional pressure worrying about contacting my doc and will she/he get back to me. Keep looking while you are using one of the big names and maybe you will find that needle in the haystack. I would also like to remind everyone that any doctor who is treating PANS is sticking his/her neck, reputation and medical practice on the line for our children. We cannot afford to lose one of them.

Iron is very difficult on the stomach and is very constipation. You need to stick to ferrous bisglycinate chelate form of iron in a low dose. DS is taking 27 mg a day. I do not know of the Vitamin Shoppe has this form or not.

What's the reference range? If its low, put her on a low dose iron supplement. My sons was 14 with the reference range starting at 22. My son takes the brand Ferrochel. It's an iron chelate with 27 mgs per capsule. He takes 1 cap a day. Has been for 4-5 months. His ferritin just got into the low normal range. He is doing much better. Restless legs and restlessness in general have virtually disappeared. He sleeps better. He's not as hyper. His doctor recommends the brand for all her patients. She sees quite a few Lyme kids and ASD kids. She said many are low in ferritin and she's seen a lot of success in supplementing.

It sounds exactly like PANDAS. My son was doing these things at age 5. Treatment has drastically improved him, not cured him. He's now 9.

Started in fall 2009. Don't ask how I know that,lol.

Dr K says it starts earlier than most people are aware. The real first episodes can be more mild in nature and dismissed as a phase, especially in young children. That is when the strep is involved. He believes strep is always the initial trigger and sets the child up for the 'big one' that gets parents attention and so, its called sudden onset. The big one may or may not involve strep. That is where you start having a hard time getting the ave doctor to recognize it, although this is changing as more knowledge is gained. You do not need positive strep titers for a diagnosis. Many other infections are now known to cause PANS ,which is what it's called when other infections are involved and PANDAS when strep is involved. My son has never had a positive strep culture nor ever had high titers to strep. He has the diagnosis PANS, which his major episode occurred after a flumist vaccination. He got better but not completely then had another exacerbation before diagnosis, after an ear infection. It took a year to diagnose him properly and get treatment. He had another exacerbation after having pneumonia last year. He's had flares off and on throughout the four years. All this to say, it's not only strep and its likely your child has had PANDAS longer than you are aware of. That OCD/anxiety he had previously was probably PANDAS.

No way in he$$ will my son ever get another flu vax. Flumist set off his original exacerbation. That was 4 years ago this Oct 17, as they say, a day that shall live in infamy in this house. No one in this house has had the mist or shot since then. It's nearing that time for flu shots and my son will start reacting to those who get the mist. Happens every year in Oct. Ok, I can't help myself. DS's doctor told me flu shots are for the elderly and those in whom the flu is a major risk. It's not financially feasible to develop flu shots for this population so the govt helps out the manufacturers by mass recommending it. The average healthy person does not need a flu shot.

I switched to Jarrow brand. You can get a huge bottle. I think I got mine on Amazon. Used Florastor for a few years but then I started taking it and it was just too expensive for two to keep taking Florastor.

Iron. We've seen a lot of improvement on a low dose iron supplement. DS's ferritin levels were very low. Way below normal range for many years.