ins says no to ivig.....looking into pex..anyone?

[Fixit]

just received denial from ins for ivig....per

Shulman ST

Singer

Moretti

Murphy

Hoekstra (lack of effect of intravenous immunoglobulins on tics)

Perlmutter,Leitman,Garvey.....

 

the only thing i see, is the hoekstra thing....and its effects on tics....which is 90-95% of my DS condition......

So......

if i'm going to have to dish out $$$$$$$$$$$$$$....should i go for pex or phersis first......

to all those who tic....

to all those who have done pex/pheris.........

I JUST WANT TO CRY......I was hanging on well enough...

I wasn't expecting approval....and all along i really wanted the other 2.......but to actually get the denial letter.......

i was hoping to follow up with a possible ivig under insurance.....

 

Does doc k ever order pex or phereis....he did mention it to me the 1st and only phone conversation we've had....

 

i have an appointment with Doc L in a month..........if she orders pex...do insurance co just say yes because its' her or has anyone been denied anyway..

......how long from time of visit to actually getting pex.....2 weeks, a month???

 

for those who tic as main presentation...if you did ivig....do you think 2 is the magic number and not wait 6 months,,,but kind of back to back,....say 8 weeks apart.....

 

WHY WONT THEY OPEN THEIR EYES!!!!!!!!

[Debbie1]

We never did PEX, so I cannot comment on that, but my dd had IVIG 6 weeks ago (1.5g/kg). Her main presentation was tics. She is doing great - at this point about 60% improved. She looks and feels much better and we expect to see continued improvement over the next several weeks, if she follows the same pattern as my son. ds had a combination of tics and OCD, had IVIG 9 weeks ago, and is now about 75% improved. We are repeating IVIG next week for him (10 week mark). My daughter is scheduled to repeat IVIG at the three month mark because she will be away at camp until then.

 

We were fortunate to get insurance approval, but not based on the PANDAS diagnosis. They both have very low pneumoccocal titers. Has your son had a full immune work up? Maybe something else will show up that will qualify you.

 

Hang in there...you will find the help you need for your child.

[Fixit]

We never did PEX, so I cannot comment on that, but my dd had IVIG 6 weeks ago (1.5g/kg). Her main presentation was tics. She is doing great - at this point about 60% improved. She looks and feels much better and we expect to see continued improvement over the next several weeks, if she follows the same pattern as my son. ds had a combination of tics and OCD, had IVIG 9 weeks ago, and is now about 75% improved. We are repeating IVIG next week for him (10 week mark). My daughter is scheduled to repeat IVIG at the three month mark because she will be away at camp until then.

 

We were fortunate to get insurance approval, but not based on the PANDAS diagnosis. They both have very low pneumoccocal titers. Has your son had a full immune work up? Maybe something else will show up that will qualify you.

 

Hang in there...you will find the help you need for your child.

 

 

Debbie ..thanks for the reply....

 

pneumoccocal titers are the same as streptococcus pneumoniae....right.....

out of 23 serotypes..9 were nonexistant...

11 were well below 2

and he only passed 3....

i don't know if scotts office put that into the request????? i will email asap....

 

can i ask ...how old is your dd

are you saying the tics are 60% better too!!!!!??????!!!!!! or that's the main thing that is better......so exciting!!!

what abx and what dose are you useing...///

and ...what doc are you doing this with.......

 

thank you sooooooooooooo muucchh.....

i am so tired of fighting with docs and now to fight with ins....

and i just feel like,,,,if we are going to go bankrupt...i might as well do pex 20k and then ivig 10k ....as opposed to a minimal of 2 ivigs to 3.......were talking 30k either way. right???

ds is 80 lbs.

 

and i am so mad at myself...the last 2 weeks i've dont nothing....just tried to be happy he wasn't at his worst and be happy for the kids..

.i should have been calling more pediatricians, immunologits, and ent's....

now its friday....called docs b's office..out..

emailed doc k this moring...i know he's away..and this was before i got rejection notice....

it doesn't pay to take your eye off the ball for one minute!!!!!!!!!!!!!!!!!!!

[Fixit]

here's the reseach by hoekstra

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=15720600

 

so...it says almost as an unexpected side effect it helped with ocd.....not tics.......

 

Buster, peg, kim...any thoughts on this.....

[EAMom]

The Hoekstra tic/IVIG study:

 

1) Adults (av. age 30 years old--range 14-63)

2) Not on antibiotics

3) Not PANDAS

 

So, this study doesn't really say anything about the effectiveness of IVIG on CHILDREN with PANDAS who are also on ANTIBIOTICS.

[sptcmom]

likewise for us too. We did the Prevnar or strep- pneumoccocal vaccine titers and my 8 year old came out totally almost non existent immuniyt on ALL bands. That quaified us for IVIG and insurance paid for it.

[Fixit]

likewise for us too. We did the Prevnar or strep- pneumoccocal vaccine titers and my 8 year old came out totally almost non existent immuniyt on ALL bands. That quaified us for IVIG and insurance paid for it.

 

ds has had all 4 prevar shots...and 8-12 strep infections......

 

did they cover it first go round or did you have to appeal....

[Fixit]

The Hoekstra tic/IVIG study:

 

1) Adults (av. age 30 years old--range 14-63)

2) Not on antibiotics

3) Not PANDAS

 

So, this study doesn't really say anything about the effectiveness of IVIG on CHILDREN with PANDAS who are also on ANTIBIOTICS.

 

 

Thanks for the reply...i think Kimbolt said the same thing on another thread....

so that makes me feel better...

now i have to get some papers to shoot back at ins...

 

On a same note....i did notice that it was only 1mg/kg...

aaannndddd, being that i follow those that tic a little closer...it seems that at minimum,,2 ivigs are needed, for most ticcers....(if you cant' get pex)

[Debbie1]

Yes, I am refering to the strep pneumo titers, although I think our lab reported only 14 serotypes. We are working with Dr. B. and are so grateful for all he has done for us.

 

My dd is 13 and has had PANDAS for about 6 years, although not diagnosed as probable PANDAS until 1 1/2 years ago. Her symptoms were primarily tics which have come and gone in severity over the years. Pre-IVIG she was eye rolling, nose scrunching, mouth streching, and had shoulder, neck and torso tics. The tics were almost constant. The only OCD symptom was compulsive hair playing, which several doctors wrote off as just being a girl (although it was definitely excessive). 6 weeks post IVIG, the tics are at least 60% better. Today was a great day for her, so maybe I would say even a little better. She is still nose scrunching, and every now and then we see a mouth strech or an eye roll, but the frequency is down tremendously. Everything else seems to be gone or so infrequent we barely notice. She still twirls her hair, but not to the same degree. My son (8), who had IVIG 10 weeks ago, made tremendous improvement in week 7, so we are hopeful that she will too. They seem to be following similar patterns in terms of healing. My daughter is currently on Omnicef (300mg capsules), 2 capsules per day. She weighs about 100 pounds. My son (50 pounds) is on Augmentin, 1200 mg per day (I think, but don't have the bottle in front of me).

 

Dr. B. is not in the office Fridays, but try again on Monday. Good luck and keep us posted!

[tpotter]

Dr. K. does not have access to PEX. Unfortunately, only Dr. L does. Both my children had PEX, and one had had IVIG prior to that (he's now scheduled for IVIG with Dr. K. in 2 weeks. Was scheduled for PEX with Dr. L, but things fell apart at the last minute, and then her son...)

 

Anyway, my feeling about the 2 is that we found PEX to work very fast, and got rid of a lot more than IVIG for my son. But, my older son did not get relief from most of his OCD (the worst one, unfortunately) with the PEX. Realize, though that my children are older, had it a long time before being diagnosed or treated, and some things are just going to be different.

 

If I had a choice, I would definitely do PEX again for both, followed by IVIG. But, that's my personal opinion.

 

I'm glad you have an appointment with Dr. L in August, so you can make a decision.

 

But, keep in mind, too that it really might be worth appealing the decision for the IVIG.

[peglem]

here's the reseach by hoekstra

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=15720600

 

so...it says almost as an unexpected side effect it helped with ocd.....not tics.......

 

Buster, peg, kim...any thoughts on this.....

I'm trying...Here's something, but you'd need to show antibodies to the caudate nucleus proteins:

 

http://www.springerlink.com/content/vh02u2g374460g0t/

Neuroimmune Aspects of the Pathogenesis of Tourette’s Syndrome and Experience in the Use of Immunoglobulins in Children

[peglem]

Then there's this:

http://www.koreamed.org/SearchBasic.php?RID=628144&DT=1

 

But symptom tic exacerbations have to be correlated with a rise in ASO titer.

[sptcmom]

likewise for us too. We did the Prevnar or strep- pneumoccocal vaccine titers and my 8 year old came out totally almost non existent immuniyt on ALL bands. That quaified us for IVIG and insurance paid for it.

 

ds has had all 4 prevar shots...and 8-12 strep infections......

 

did they cover it first go round or did you have to appeal....

No appeal. Cleared in two weeks by insurance.

DS had 4 shots of prevnar too. None took. Poor guy. All it did was introduce live germs. Who knew. He's had Pandas for 6 years. Each episode/flareup was different and mimicked common childhood illnesses- thats what happens often Dr .K told us.

[tpotter]

I want to PM you about this, but your inbox is full.

[EAMom]

I think it was 2gm/kg.

 

It says " 1 g/kg on 2 consecutive days" so I think that means total dose is 2gm/kg?? each day is 1gm/kg....but that's not 100% clear.

 

Because it's possible it means 1gm/kg total spread over 2 days.

Maybe it's clearer somewhere in the paper?