IV #8

[melanie]

Im not complaining I happy to have the IVs .I read Pegs post and I agree with the progress we see with our children.I THINK IT DOES MATTER HOW LONG THEY HAVE HAD pandas .Ill keep posting

 

Melanie

Edited June 25, 2010 by melanie

[Fixit]

Im not complaining I happy to have the IVs .I read Pegs post and I agree with the progress we see with our children.I THINK IT DOES MATTER HOW LONG THEY HAVE HAD pandas .Ill keep posting

 

Melanie

 

can i ask....do you have a percentage of progress...25% better etc...

 

i just want to hear some good stuff..

ds' wrist /pull is so hard you can hear it snap...

his head nod is so hard it gives him head aches....

and though the screech is gone(per vancomycyin)(2 times it came, 2 times it left on day 12 of a 14 day dose)...he now has a popcorn sound..and a sneeze, like Lauren....many times a minute...

 

and as per my recent post, just got turned down by ins for ivig....

[melanie]

Motor tics 100% gone,after 2nd IV.We do low dose every 21 days.1g per kilo ,others do 1.5-2g over 2 days.The verbal tic(cursing is 50-75%better.Some days we dont hear any some days some and other days alot.Most days little or none.We are goning to see Dr B on July 8th I will see if he thinks we should increase to higher dosage and have the iVs less often.But for now we will trust our dr and do what wwe are doing.

 

Dont give up on the insurance company.Call every day call a lawyer.They are worth it.

 

Melanie

[Fixit]

THANK YOU.....

i am sitting here ...tears running down my face......

i needed to hear that from someone who KNOWs pandas......

 

so...how bad were your boys motors...50% of his symptoms?????

 

and even though he still has vocals....they are like a tide going down, with waves???

 

I REALLY NEEDED TO hear this too!!!!!!!!!

 

Just needing to reaffirm what i know...especially withe that paper by hoakstra......( so maybe they didn't know that 2 ivig are needed for tics!!!!!)

 

THANK YOU

[melanie]

What is this paper? I know PANDAS as well as you ,I dont always understand all of the information and to be quite honest Im confused alot of the time.I think this illness is horrible and complex.I think theres so much nobody knows .I hate to be the one to be learning I would rather be in my pool then sitting on the couch watching an IV in my sons arm .But Im greatful

 

Danny had a walking tic he would walk and then stop shuffle shuffle walk .I cant believe thats gone .He also has coperiala thats 50% gone.Only shows up when hes angry,I

[Fixit]

What is this paper? I know PANDAS as well as you ,I dont always understand all of the information and to be quite honest Im confused alot of the time.I think this illness is horrible and complex.I think theres so much nobody knows .I hate to be the one to be learning I would rather be in my pool then sitting on the couch watching an IV in my sons arm .But Im greatful

 

Danny had a walking tic he would walk and then stop shuffle shuffle walk .I cant believe thats gone .He also has coperiala thats 50% gone.Only shows up when hes angry,I

 

 

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.......

 

this is one of the papers the ins used in denying ivig......

[kimballot]

I've not read this entire paper - only the abstract, but from the abstract it looks like they were testing to see if IVIG helped kids with tic disorders - NOT kids with PANDAS. That is why we need to get good at diagnosing PANDAS - so we get the right treatments for the right kids.

 

Also, this study used 1mg /kg - most PANDAS docs are using higher concentrations (though I think you've said that Danny does well with a lower concentration).

 

We need a study of PANDAS kids at different dosages to see if IVIG makes a difference in the long run and to find out the best dosage and frequency for PANDAS kids.

[melanie]

danny does 1 mg it definitly helps the tics not as great with the ocd ,but well it does help with the intrusive Danny also has aspergers so some of his stuff is related to that too.Any way hes doing good right now,IV took 7 hrs it was a long one.

 

Melanie