melanie

Hes on clindimicin(sp)150 mg 2x per day I dont know how long I think were playing it day to day untillI can get the IV for him again Love you guys Thanks for being there Melanie sorry hes 138-140 5'8 1/2 Hes 151/2yrs old so hes older then most of the kids on this forum

Hes on clindimicin(sp)150 mg 2x per day I dont know how long I think were playing it day to day untillI can get the IV for him again Love you guys Thanks for being there Melanie

Hi we saw Dr T and it went well We are discuusing different things and getting some blood work.We are on antibiotics now and hoping to get IVIG sometime soon .Insurance is still giving us a hard time and I feeling down but with Dr.Trifiletti on our team I feel more confident that were going in the right direction.He really knows PANDAS and Im glad real glad we went and saw him . Melanie and Danny

We had the same issue with bcbs we did a treatment ivig in sept and are awaiting to do another one bcbs no is turning us down

I dont know how big these pills are but we learned by loading pills into a straw kinof like a spit ball and when he sucks in down it went Its been a long time but try it also Im sure others have told yo to hide it in applesauce or something good luck

Im going to ask the pediatician about antibiotics He doesnt know about pandas he was willing to do IV monthly but doesnt know the dosage Ill call him monday I have my union talking to the insurance company Thanks for caring it helps I sent a note to dr trifiletti thank you everyone I am so blessed you are all here I hope someday to tell you hes healing and be able to help others please pray for him Melanie

Hey how old is your pandas kid

Im going to ask the pediatician about antibiotics He doesnt know about pandas he was willing to do IV monthly but doesnt know the dosage Ill call him monday I have my union talking to the insurance company Thanks for caring it helps

Melanie -- please know I feel your pain here and the difficult decisions you have to make. I can't advise you on the IVIG -- I can say that we had an enormous improvement in symptoms 2 weeks into starting prophylactic azithromycin. If it is PANDAS the very, very first thing is to ensure you've gotten rid of the GABHS and protect against having another attack. IVIG has a *lot* of risks and is more a last resort rather than a first path. In our case we were pretty desparate and our child was at an all time peak of symptoms when we finally convinced a doctor to try azithromycin -- I basically said that I didn't care if it was just placebo effect or anything else, but that good medical science on the balance of risks/benefits indicated that this was a reasonable trial based on best medical evidence. On the 10th day of daily azith -- we had substantial improvement in symptoms -- I'm not kidding. In June it was as if a fog cleared and she said "I want to get better" -- oh, my goodness. Over the next month almost all symptoms abated. So please, please see if you can try the low-cost, low-risk azithrmycin route for an extended 30 days before jumping at IVIG. I personally think that IVIG without prophylatic antibiotics is just throwing the treatment away. Regards, Buster But the neuro wont do the antibiotics and my son isnt sick sick hes just a neurological mess ..I can call another md I know his neuro will tell me if I do that hes not going to treat us anymore Does the iV work or not? We saw a huge improvment for about 2 1/2 weeks but its all gone also maybe you will understand this when we 1st tried risperadal it worked great for about 2-3 weeks does that mean anything so you think i shouldnt do iV why does my md think this time it will work? But if you haven't killed the strep, then you will always have it come back. Usually antibiotics would be first. I wouldn't post about this if you weren't about to spend $18,000! But if your Neuro will not allow you to ask for a second opinion, then you have a problem. I would call the docs suggested above & beg for the first available appt. Don't tell your neuro if you don't want too. I am not an expert on this, but the idea of IVIG without antibiotic protection makes me very very very nervous for you. Can you find a Ped to do the antibiotics? Hi he did the antbiotics about 8-9 months ago had some help but then we did the IV beg of sept and it was ammazing just for a while then not so good some good stuff still thats why Im thinking of doing it again so does it work or not putting the money aside say i didnt have to pay would it be a good idea or not?I thought its like a cure now im seeing it wears off monthly?Confused

Melanie -- please know I feel your pain here and the difficult decisions you have to make. I can't advise you on the IVIG -- I can say that we had an enormous improvement in symptoms 2 weeks into starting prophylactic azithromycin. If it is PANDAS the very, very first thing is to ensure you've gotten rid of the GABHS and protect against having another attack. IVIG has a *lot* of risks and is more a last resort rather than a first path. In our case we were pretty desparate and our child was at an all time peak of symptoms when we finally convinced a doctor to try azithromycin -- I basically said that I didn't care if it was just placebo effect or anything else, but that good medical science on the balance of risks/benefits indicated that this was a reasonable trial based on best medical evidence. On the 10th day of daily azith -- we had substantial improvement in symptoms -- I'm not kidding. In June it was as if a fog cleared and she said "I want to get better" -- oh, my goodness. Over the next month almost all symptoms abated. So please, please see if you can try the low-cost, low-risk azithrmycin route for an extended 30 days before jumping at IVIG. I personally think that IVIG without prophylatic antibiotics is just throwing the treatment away. Regards, Buster But the neuro wont do the antibiotics and my son isnt sick sick hes just a neurological mess ..I can call another md I know his neuro will tell me if I do that hes not going to treat us anymore Does the iV work or not? We saw a huge improvment for about 2 1/2 weeks but its all gone also maybe you will understand this when we 1st tried risperadal it worked great for about 2-3 weeks does that mean anything so you think i shouldnt do iV why does my md think this time it will work?

Hi I did see Triffaletti about 1 yr ago at morristown Memorial he was hard to get ahold of I will call him and see if he calls me back Does anyone have his # Ill try again I dont know hes never going to give us the antibiotics I dont know why Ill ask but

Itlookslike weregoing to do the iV 9,000$$ for the med and 2,100$$$ a day for the hospital stay x 3 days I stillcant get the insurance to cover the procedure Im tring all avenues I am confused Should i not do this why does he feel like antibiotics are bad?He isnt the risperadal md thats the psy hes the neurologist .I had to up it hes sooo angry at school he hit a teacher .It doesnt get worse i have to do something .Hes allergic to penicillin so augmentin is out .Should I not do the IV I count on you guys help!!Its a 18,000 decision . Melanie

Itlookslike weregoing to do the iV 9,000$$ for the med and 2,100$$$ a day for the hospital stay x 3 days I stillcant get the insurance to cover the procedure Im tring all avenues I am confused Should i not do this why does he feel like antibiotics are bad?He isnt the risperadal md thats the psy hes the neurologist .I had to up it hes sooo angry at school he hit a teacher .It doesnt get worse i have to do something .Hes allergic to penicillin so augmentin is out .Should I not do the IV I count on you guys help!!Its a 18,000 decision . Melanie

This dr doesnt want him on anyibiotics I have fought with him but,,Im going to give this q1 more try then I have to move on I want him to do the IVIG again It worked I want to get him dx with somekindof autoimune issue what can I do to get this?I have seen every md but no luck This is extremly aggravating,heatbreaking and I cant take much more of this!!!I am also going to call Dr K again and set up something I hate my insurance company,I have to increase my sons medication Im very angry about that to lets just treat the symptoms not the cause Melanie

thanks I emailed dr.Swedo does she answer people back?

how old is your DD

I know the ivig was like 3,000 or thats what the insurance comp covered.I dont know about the hospital I never got anything on that.He had a slight headache when we got home we gave him some advil and he was fine nothing after that , Im a teacher and Im going to go to the union rep tomorrow but Im afraid to wait to long.Im so scared I am going to up his medication to .75 mg of risperdal I sooo dont want to do it but I dont think we have a choice now until we can get this done I wish sometimes that someone else would just help me do it for me om just tired of this Hes tired of this he doesnt deserve this .Why why why???

It is in my county I doubt Ill be able to get assistance why is this happining I dont know if the md will lie to the insurance hes head of neurology

My insurance company has turned us down again.They are saying the 1st IVIG was a mistake and shouldnt have been covered.The neuro has done a peer to peer and tried to speak to them this is the same md that got it covered the 1st time They say in their letter that this is investagatioal and not approved.But they did it once and the md wants to do it again.I am willing to pay for it out of pocket the only problem is my md wants him in the hospital!!He was there for 3 days last time thats going to raiise the price significantly.How can i convience the insurance to go through with this.I am a teacher and have good insurance so I thought,I am going to go to my union and get a lawyer if need be but meanwhile things arent good here Hes not on any antibiotics.I am waiting for his pdychiatrist to call me maybe I need to go up on his risperadal until I can figure this out .I cried 1/2 the day he came home and told me hes sick of this tourettes and he cant help when he gets angry. He hit a eacher and embarassed himself.I truly am so desperate The md is going to tell me how much it will cost to so this.I have to try right?Im tired and I feel hopeless .I know how great it was for 2 weeks The md said hes upping the iv 1/3 so hes not ok with doing it at an infusion center.Who can help? Melanie

HI Buster My md saw this study too. This is why he haulted danny 2nd IVIG!!!But one good thing is he saw a difference from the1st so he knows it works Melanie

Is your child on antibiotics?

Saw the neurologist yesterday he was talking about the ammount of IVIG he used in aug said something like 400 ccor ?? Planning 600 something for the next one ?I should have probbed deeper but well Im overwhelmed is that the dosage he even said he may have gone higher Keep your fingers crossed Melanie

I feel for you and totally undersrand and relate.My son is 15 and has been through 2 years of ###### We did the IV and it has helped were waiting to do more .He kept saying this is going to get rid of the ourettes over and over he did have some breathing anxiety like long staggered breaths the mds said it was anxiety like he couldnt catch his breath. It went away when he left the hospital. The drs gave him benadryl so maybe you can speak to them about something to calm him.If he wants to talk to my son let me know he will try to make him feel better.Good luck!

Thanks I remember the day when he took the amox and broke out in a rash The ped made us wait in the office to see if he would react to it and he did.He was on the zith but I couldnt get the md that prescribed it to continue .Wish me luck tring to get it today.. Melanie

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