nicklemama

I'm not there yet, but as a mom of child who's PANDAS was set off my FluMist, at this point I cannot imagine giving my DS7 another vax ever. Dr T said no more ever. Dr K said tetanus only. I plan to have his ped fill out a medical exemption when the time comes.

My DS takes Coromega fish oil in squeezers that are flavored lemon lime. He's been taking it for at least a year now. Its part of Dr K's post IVIG protocol. I don't notice any difference, one way or the other.

My DS's IVIG was coded post infect encephalitis. It was denied and we are currently working on an appeal. I'm not sure the code even matters much. They are set to deny.

Wilma- They can come in and take your daughter and admit her against your wishes if they feel she is a danger. I think they do have to go through the court system, maybe by getting a judge to sign off. Be very careful. You do not want to lose control of her. There is a mother here in Michigan that recently made national news because she did not want her teen daughter treated w/ psych meds and the doctors disagreed and had her removed from the home. The mother was jailed because she used a gun to try and keep the police from entering her home.

Christy- You do not need a confirmed case of strep to get a PANDAS diagnosis. My son has never had a documented case of strep, nor have we suspected him of having strep. He has had ear infections that we believe somehow led to PANDAS, coupled w/ being given the FluMist. I believe the strep part of PANDAS kept my son from being diagnosed for a year. He was diagnosed by Dr T last fall and it was confirmed again by Dr K this spring.

Wilma- I would see it through come you know what or high water. Hang in there Wilma.

We had to buy the headphones. They are pricey. Our OT clinic rented the cd's needed for $5 and you kept it until the next session. You do need an OT trained in therapeutic listening to correctly prescribed the proper cd's based on your child's issues. My DS had a lot of aspergerish behaviors(unbeknownst to us he had PANDAS), although the listening therapy was for his SPD. I thought it helped him but abx is really what brought on huge improvements.

All I can say is a big, fat YES!!!!! You let down your guard and have expectations. I am so guilty of this.

My DS used a therapeutic listening program for about 6 months for Sensory Processing Disorder (which we now know was caused by PANDAS). He also listened to prescribed music for 30min 2x a day through special headphones. It seemed to help him calm down. He does not have auditory processing issues, though. Once we started abx for PANDAS, the SPD symptoms went away and we stopped going to OT.

bcdbwc- I questioned myself many times and doubted myself many times. I just couldn't believe my DS could have PANDAS w/out strep. He did very well on abx. We saw dramatic improvements. Unfortunately, he's had PANDAS too long and abx only got him so far along. He's only 4 days post IVIG, so I cannot comment on whether its working or not. He's not worse.

My DS has normal to low titers ASO and antiDNAse. His last DNase was <1:60 and his ASO was <25 IU/ML. His mycoplasma titers are normal too. I don't know how to get your pediatrician to understand. Ours didn't. I actually didn't spend too much time trying to convince the ped since my DS was so sick and needed help and we'd wasted so much time already. My DS has never had a documented case of strep. He's had ear infections and I believe his very first episode was after an ear infection when he was barely 3. He had some unusual irritibility and tantruming for about a week while on abx for the ear infection. It went away. Next episode was at age 5, after ear infection dx. Irritibility and defiance lasted a few months but it wasn't severe, just out of his normal. The big one hit at age 5y9m after the FluMist. We had no idea what is was and it took a yr for diagnosis. Dr T told us it was PANDAS and DS just had IVIG w/ Dr K. I don't need his pediatrician to believe. My son couldn't wait for that and while I understand why you'd like to get the ped on board, I wouldn't waste too much time on it. He/she may never come around. DS's kind of believes now, but she's not going to do any treating. The only thing I hope for is to use my DS as a teacher so that she might recognize this in any current or future patients.

Wilma- You deserve to celebrate any bit of good news.

There are two doctors who will consult by phone. Dr T in NJ and Dr K in Chicago. I've had absolutely no luck w/ local doctors. The local psychiatrist believes in PANDAS but will not treat PANDAS but will offer psych meds. Those will not heal PANDAS. I started out consulting by phone w/ Dr T. He ordered a ton of blood work and had my son started on antibiotics, which made a huge improvement. Six months later, we had reached a plateau. Since NJ is much further than Chicago from us, we went to Chicago last week for IVIG.

I would definitely pursue PANDAS. Be wary of strep titers. My DS has NO documented case of strep and has normal strep titers. I guess he's probably actually PITANDS. His first episode was set off by the FluMist. My son has many similarities to your son. Early reader. Advanced talker (and he talks a lot!). Math abilities. Some perfectionistic traits. He's 7 in 1st grade working well above grade level.

He only said tetanus, so I'm going to assume he means the singular tetanus but I will ask him about it. My son is 1 day post IVIG and I will be talking w/ him in a few days.

Just yesterday, Dr K said tetanus vax was fine but nothing else. That said, FluMist set my DS's PANDAS off and I will not be gettig him vaccinated ever again.

Well, I've hesitated to post this but I believe I should just so you are aware of all the possibilities. Keep in mind, my DS was 6.5 years old. He was placed on Celexa, a small dose. I can't remember now what the exact dosage was. He had one increase in dosage. He became suicidal and we immediately started taking him off it. He was on it for 2 momths.

I sent you a private message about our small Michigan PANDAS support group.

The charge to insurance, if it agreed to cover, was a lot more than that. I believe the gamunex is around $130 per gram and my son needs 1.5g to the kilo. He weighs 55lbs. The out patient centers total charge to us, without insurance coverage for this is $6600 for gamunex and facility fees for nursing, IV lines, use of a room for two days, IV fluids, benadryl administration preIVIG, not sure but maybe steroids. Our doctors fee is $2400. The total comes to $9000. I think the center is actually getting around $1800 for the two days. The IVIG med is nearly $5000 all by itself. I don't think they are getting rich on uninsured patients. The drug company seems to be getting its fair share. We will appeal but I don't have much hope.

Our insurance, BCBS MI, has denied us. We will appeal. The center where DS is having his IVIG has given us an uninsured price if insurance does not come through. Cost will be $9,000 in total. DS weighs 55lbs.

Negative Western blots in Oct and Mar.

The only prep is lots of fluids. DS has IVIG next week.

My DS has no siblings, but he did really well, even during the worst of his exacerbation, when he was playing w/ his best friend, who lives down the street, especially if he was at the friend's house. He did not play well w/ other kids, though. His friend's mom, who is also my friend, always said he did great and if she didn't know better, she wouldn't know anything was wrong when they were playing together.

Christianmom gave good advice for getting in touch w/ Dr T. He diagnosed my son and I am forever in his debt, after going from dr to dr for a year. He has been directing DS's treatment for 6 months now. We don't live anywhere close to him, so, next week, DS has IVIG w/ Dr K. I plan to use both dr's. They both have their strong points. I would say to try and remember, these are very forward thinking doctors and they are in very high demand. They are well known, and we all know they are among the very few who treat PANDAS. I imagine they are bursting at the seems w/ PANDAS patients. If DS is about to run out of an rx, I put urgent in the title. I always get a reply. I use my "urgents" infrequently and only when I absolutely have to. I have averaged having a consult once every three months.

We've been through 3 w/ Dr T. I would say it takes a while. When we first put DS on biaxin, we started seeing small improvements w/in a week (no steroid burst). After 60 days of biaxin, my son was about 90% of his former self. He was placed on a prophylactic dose of azith for a month (2x wk dose) and he back slid. He was put on Augmentin for 30 days w/ some improvement. He's been on azith treatment strength for almost 2 months and just this past week, he has been doing really well. Just in time for his IVIG in 1.5 wks.