I really need some help

[dcmom]

Melanie- You should consider going back to Dr Triffileti- he does prescribe abs, and is fairly open minded...

[EAMom]

good idea DCmom....and he's close NJ/NY?

[melanie]

good idea DCmom....and he's close NJ/NY?

 

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

[melanie]

good idea DCmom....and he's close NJ/NY?

 

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

[thereishope]

If it's the same neurologist who didn't give antibiotics the first time, I would explore a different doctor first. I know it's scary and you want to fix everything asap, but take a step back and look at the whole "situation". Does anyone know how long the wait list is for an appt with Dr Triffileti? I say at least call his office and explain the situation. Perhaps you can speak to him directly. Every office has an appt hiding in their appt book for emergencies. It's up to you to let them know you are the one who needs that appt.

 

I'm sure this posted earlier or somewhere else, but can you go down a list of what he is taking? Maybe there is something being overlooked that someone here can suggest in the mean time?

 

Do you have the IVIG already scheduled with the otehr neurologist? if so, for when?

[Kayanne]

I know it is very hard to stop going a direction once you start, but I also agree that you should consider changing drs. Before we found out about Dr. Latimer, we already had seen an Infectious Disease Dr. who told us to take her to a Pediatric Psychatrist.

 

Basiclly, what we did, was follow the road that our pediatrician had laid out before us...CHOP ID Dr.....ped psych....rhumey at Hershey. but we also saw Dr. Latimer...so we were going down two roads.

 

I am not saying my daughter's ped was not trying...he made calls, and kept coming up with neurologist who didn't believe in it...I had to keep reminding myself that he is a general practicioner, and it is his job to get my daughter to a specialist.

 

Perhaps you can call Dr. Trifelli (sp?) and pursue having your child seen by both...maybe they can discuss your son's case. A phone call to Dr. T's office to explain the situation is not going to hurt anything, but it may lead to more doors of treatment, and a dr who really gets PANDAS.

 

Good Luck

 

~Karen

[EAMom]

I wouldn't do any more IVIG until you get your son back on Azith (long term)....otherwise the IVIG is likely money down the drain. It's also possible you might have substantial improvement on the Azith. alone.

[melanie]

I wouldn't do any more IVIG until you get your son back on Azith (long term)....otherwise the IVIG is likely money down the drain. It's also possible you might have substantial improvement on the Azith. alone.

 

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

[Buster]

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

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

[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

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?

[Megs_Mom]

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

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?

[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

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

[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.

IVIG is about your child being sick sick -- meaning this isn't just traditional OCD or Tics but rather that the pathogenesis (i.e., cause) is auto-immune. An auto-immune disease is about being sick sick.

 

Does the iV work or not?

Presuming you meant IVIG rather than just IVs, IVIG does have documented benefit for those with immune disorders. The exact mechanism is not known, but it is thought to help close the blood-brain barrier (anti-inflammatory) and suppress certain auto-antibodies.

 

We saw a huge improvment for about 2 1/2 weeks but its all gone

 

That is a pretty short time. In our case we saw a decline for the first week post IVIG and then improvement after that.

 

also maybe you will understand this when we 1st tried risperadal it worked great for about 2-3 weeks does that mean anything

Don't know. Risperadal acts to regulate the amount of dopamine and seratonin. Are you still on Risperdol now or did you stop it? How long were you on it?

so you think i shouldnt do iV why does my md think this time it will work?

I'm arguing that while you are waiting to schedule IVIG and considering the expense of it, protecting against another strep exposure may help n the effectiveness. In the literature the studies of IVIG on sydenham chorea, kawasaki's disease, ARF, and PANDAS have all had the patients use prophylactic antibiotics before/after treatment.

[bubbasmom]

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

We found a Hematology Office that agreed to do IVIG. No hospital stay, so way cheaper I assume. It was in an office that does infusions for kids with cancer and other immune disease. It was actually at a cancer center. Just a thought. It was 11 hours one day 9 the next but not inpatient. We're in St. Louis.

Denna

[thereishope]

When you say sick sick, I'm assuming you mean you don't think he has strep. But how do you truly know that? As you see by so many kids in this forum, it can be be anywhere. Or what if he has a different infection hiding out somewhere? Was it your son that had the tooth infection? If so, perhaps that is still lingering in his body or blood.

 

I'm not saying to wait on the IVIG because of the money. Even if it was covered by insurance, I still wouldn't want to put my son's body and psyche through that w/o covering all bases (antibiotics). Not only that but if you go through the IVIG, do not get antibiotics after it, and you don't see improvement, you may then be facing docs saying something like it's not PANDAS because IVIG didn't work. When, in fact, the reason it didn't work is the lack of antibiotics. See how that can snow ball? I agree with Meg's mom. A doc that freaks out over a second opinion is not good.

 

What is your ped's opinion about being the one to prescribe long term antibiotics?