melanie

I was extremely nervous before the first IVIG. I think it's definitely normal. Is he having IVIG on all three days? As far as I know yes 3 days

Im gettining nervous Is this normal? Anxious but nervous This is going to help ...yes? Then I m thinking what if it doesnt? Then what ..Just needed to share..Melanie

Thanks and i have BCBSNJ PPO I dont know how the md put it in to them Im pretty sure he went PANDAS I know he was concerned because danny also has aspergers .We are having it done at Jersey Shore Med Center I spoke with one of the Ped nurses today she didnt have alot of answers but I think they were real busy I will keep you posted Oh we are going for 3 full days

I just recieved the call from the neurologist We go Monday the 31st for the IVIG and my insurance company approved it we just explained it to danny and even he is happy I am feeling such a relief I cant even explain how we are feeling 1 because we are getting treatment and 2 the insurance is covering it please pray for us I dont have all details yet Im waiting dfor the md to call us tomorrow what questions do I ask? Melanie

I just recieved the call from the neurologist We go Monday the 31st for the IVIG and my insurance company approved it we just explained it to danny and even he is happy I am feeling such a relief I cant even explain how we are feeling 1 because we are getting treatment and 2 the insurance is covering it please pray for us I dont have all details yet Im waiting dfor the md to call us tomorrow what questions do I ask? Melanie

Tell me your secret how did you get them to pay they havent turned me down yet but Im preparing myself

Im still waiting on the insurance answer I hope they dont turn him down. He also has asd so its nice to hear someone else who has the double wammy.Danny did ivig when he was 3 or 4 I dont remember .Our md is a neurologist our DAN dr thinks his pandas is cured from azith because his titers are good some get it some dont .Does your daughter go into the hospital for the iv or do you go to outpatient We are going to the hospital for 3 days Melanie

Hi Nancy Thanks for responding what do you mean for a year? How many times has she done it? Im still awaiting the call from the MD about insurance coverage. Melanie

Im reading and reading My son is going to do the IVIG in a few weeks hes 15 is there anyone out there thats older and has done this

Hi I just finished speaking with dannys neurologist and its a go with the IVIG well were waiting for the insurance info I wanted to know for those of you that didnt get insurance coverage how much was the cost DR said no charge for him so thats good but he will be in the hospital for 3 days not next week but the next week That stinks because Im a teacher and of course I go back to school the 1st week of Sept so whatever god works in strange ways huh? also can someone foward me info on how the IVIG exactly works PLEASE my husband is a bit confused and so am I Melanie

PEX = Plasma exchange / plasmapheresis. I still have to get his medical records Ill know more this week I dnt know his plan He seems set on the IVIG Ill keep intouch Melanie

Hi We went to our old neurologist and within 10 minutes he asked me if I ever heard of PANDAS I stated to cry. I am in the process of getting all of his medicalrecords together to show corralation beteween illness and tics /behavior I think he is going to do the iVIG well I think I hope I dont know many of you know my story cross your fingers and hope for the best I will keep in touch I dont want to jinx anything Melanie

Hi I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie Hi I hope I didnt offend you I know how hard autism and tourettes is believe me . I dont like using meds at all I hate it but It helped danny not get so angry to where we were looking for placement. He is much less angry now and able to do so many more things .I am using risperdal and it does have side effects but they all do.But so does staying in a home locked away because he was so angry.I was very thrilled when he first started the med not so much now it doesnt seem to be working he seems frusterated and very anxious I get the same way when hes like this were going away for a few days I think its also that he is at sleep away and were picking him up today. I know they are going to tell me he was cursing and angry I dont want to hear it . I am so confused 1/2 of the time .torn about what to do next The tics are so obvious cursing and he has a walking tic he stopps and kindof cracks his feet. Maybe that came from the meds?His neuro said he should increase the dose and it should help Hes on 1 mg a day risprerdal maybe ill increase it to see if it helps since i can keep a good eye on him all week Just know your not alone and theres lots of us out here that will listen when your tired. Im scared for him I want this to go away I hate tourettes I hate autism but I love Danny so Ill keep tring Melanie

Hi Danny gets adjustments 2x a week at the chiro He hasnt had any xrays .He also does other stuff im not sure (probably not a agood thing) He rubs on the top of his head I see him again on friday Ill ask. I did speak with the chiro (neurologist) last spring .I felt it was another longshot for the cure.I live in Nj but he was 1 hr away to go that distance 2x a week was to much.I have several chiro friends and relatives all of them do adjustments on there kids . Danny loves it it doesnt hurt we do it for the anxiety issues.Insurance covers it and I have a 5 $ copay .I think if you finf a chiro with good creditials that has a pediatric specialty its woth a shot . Our doesnt know of specific adjustments for Tourette syndrome . Melanie

Im not sure if this will help but my son has an egg allergy his doc said he cant have anymore immunizations because they all have eggs in them so try the allergy route

Im confused We do biofeedback and I think it realy helps (although we didnt go today) sometimes he has 1 or 2 days of relief.We do it for the anti anxiety component .Does the nww research mean its harmful I feel stupid again Melanie

Hi I have a simular situation with my son Hes 15 and has TS and ASD what a nightmare we have tried everything meds supplements diets etc some worked some didnt. I have him on Risperdal now because his behavior was so bad we didnt know what to do Hes a great kid who was suffering he curses and has some motor tics I hate using meds but for now its what we are going to do I know the choices are hard but your son is 18 and can make legal decisions Good luck melanie

FYI- I found this http://renewalenterprises.com/paracidin.html Thanks is this have any truth has anyone tried it is it a safe med?

did anyone see the Judge show today ? They had a kid on with tourettes who is using a homopathic medication ( peracedin )sp he said he has vocal and motor tics and that they were real bad and that his tics were caused from a parasite he seems to be doing great any one have any info?

http://www.centerwatch.com/clinical-trials...?StudyID=139031 Has anyone done this ?

Well I doubt any ones got a worse vocal tic then danny .We were on Topamax generic 50 mg for about 2 months .saw no change but he also has Aspergers so wether or not that has anything to do with itI dont know .But Im glad we tried it . He did get some word finding issues which made him a little angry which caused anxiety which caused tics.. Hes 15 weighs 130ish hes on another med now doing better but not sure about some side effects I think hes having going to see his neuro at Columbia Presp on wed .If its what I think it is were screwed!! Good luck I know theres alot of people that like the topamax so good luck melanie

I hope and pray things get better fast so you can enjoy that special day

I looked into this extensivly (sp) worked with the tourettes society of nj and I know your child has to be extremly motivated to do this it requires so much focus we didnt do it yet not off the table but they also said when you extingush one tic you may end up with another so times in our case the other is more obivious good luck and let me know

Mommyof2, I know what you mean. I though it was around $3,000 as well. I also posted a question on another forum to ryansmom who had this done for her child, and wanted to ask her what kind of tics her son had. Still waiting to hear from her. Linda I think this mom that you refer to is one of those on the video if you've been able to view it. Faith Hi Im reading through the posts has anyone gotten one of the mouth pieces? Does it really work someone that has been to him and actually had results not someone from his website someone from here.