Difficult decision

[patric]

Hi Everyone,

Could you please advice on whether IVIG has worked for your child? Would you recommend it? I have it scheduled for next month, but am worried. Are there serious side effects, or just the nausea, headaches, etc. Is it a "cure" or will the same symptoms come back? Is there something else better, or is IVIG the best route? I also think my son-age 8 may qualify for the NIMH study. Can anyone tell me about that? He has just finished his 5 day steroid burst and tics seem to be less, although he overreacts and gets upset more easily. Not sure if that is related to the burst.

Our Dr. is Dr. K. in Chicago area and I feel he is extremely knowledgeable and has treated hundreds of PANDAS patients, but still want to know what the parents think. I am new to this and don't quite understand all of the abbreviations, so I would really appreciate any help.

Thank you so much!

Sharon

Oh, and any suggestions for getting it reimbursed by insurance? We have HMO...ugh

[ziva]

Hi Sharon,

I am pretty new to this too and cant wait to see the responses. I was actually just going to post a similar question. We also see Dr. K, and he has reccomended IVIG for my son(7), and probably for my daughter(6) too. The are both presenting so different, that my daughter might be the one that needs it first as she seems to be getting worse. And my son seems to get better on abx and stay ok for a while.

Right now we are just trying to rule out any other underlying infections to help us decide if IVIG is the way to go.

 

But what I did want to tell you was that I spoke to the people doing the screening for the NIMH clinical trial. My son doesn't qualify, he presents with mostly hallucinations, voices, then anxiety. But my daughter is all moods/anxiety/ocd and seems to be a good candidate. I spoke to someone who screens for the study, and she passed the first two over the phone screenings. Right now we are in the process of getting all of the medical records to them, so they can go over them all and let us know if we can proceed.

 

I am not sure if he would be able to participate though since he had steroids already....I would call them with any questions though, they are super nice.

But here's what I know about the study so far:

they will pay for all of the travel, and the stay for both parents and child.

it is a one week stay (Bethesda, MD)

blood work before and after

an MRI

a spinal

2 days for IVIG

and several interviews, before and after

Regardless of whether you have the placebo or IVIG, you will be able to do the real IVIG 6 months after the first trip.

The child is also put on 6months of abx after the IVIG

 

This forum is wonderful. I am sure you will get some good feedback. I will be checking all of the responses, and trying to figure out what to do too

Holly

[patric]

Hi Sharon,

I am pretty new to this too and cant wait to see the responses. I was actually just going to post a similar question. We also see Dr. K, and he has reccomended IVIG for my son(7), and probably for my daughter(6) too. The are both presenting so different, that my daughter might be the one that needs it first as she seems to be getting worse. And my son seems to get better on abx and stay ok for a while.

Right now we are just trying to rule out any other underlying infections to help us decide if IVIG is the way to go.

 

But what I did want to tell you was that I spoke to the people doing the screening for the NIMH clinical trial. My son doesn't qualify, he presents with mostly hallucinations, voices, then anxiety. But my daughter is all moods/anxiety/ocd and seems to be a good candidate. I spoke to someone who screens for the study, and she passed the first two over the phone screenings. Right now we are in the process of getting all of the medical records to them, so they can go over them all and let us know if we can proceed.

 

I am not sure if he would be able to participate though since he had steroids already....I would call them with any questions though, they are super nice.

But here's what I know about the study so far:

they will pay for all of the travel, and the stay for both parents and child.

it is a one week stay (Bethesda, MD)

blood work before and after

an MRI

a spinal

2 days for IVIG

and several interviews, before and after

Regardless of whether you have the placebo or IVIG, you will be able to do the real IVIG 6 months after the first trip.

The child is also put on 6months of abx after the IVIG

 

This forum is wonderful. I am sure you will get some good feedback. I will be checking all of the responses, and trying to figure out what to do too

Holly

Hi Holly,

Thank you for the info. on the study. It is really helpful. Oh, and I am from Illinois too, from south suburbs of Chicago. Just wondering if you are near me? You mentioned your son is on abx. Was this to put off IVIG to see if that might work first? Sorry, I am new to all of this and don't know all of the treatment options. I also may have posted twice accidentally.

Sharon

[ziva]

Hi Sharon,

My son was on abx. (he also had a cough besides his PANDAS symptoms) and they seemed to have worked for him at the moment. He was on azithromycin/10days only which he started on Apr.25th. His symptoms have really faded away to just some slight anxiety right now.

 

My daughter is on Clindamycin/10days (no physical symptoms this time, just PANDAS stuff), and we are only 5 days into that. I think her symptoms *might* be improving. But not sure what's going to happen after that. My ped. just thought maybe there was some strep or something still lingering since she was getting worse (OCD, rages, etc.) and not better since her last round of abx. after a strep infection.

 

Our ped. doesn't do prophalactic abx. so I was happy to just get either of them on anything.

 

I was hoping that the abx. would clear everything and we wouldn't have to do either for a while. Dr. K is thinking that they'll be good for the summer, but as soon as school starts everything will ramp back up again. He reccomended IVIG, and said now would be a good time.

 

We are also consulting with Dr. T in NJ.

I have been trying to decide which path would be best for us. Still not sure, I change my mind almost daily.

 

I am not too far from you.....I will send you a PM.

[mom md]

Yes, it works! My son was a very bad case and he is now completely asymptomatic. He has been without symptoms for 8 months now. My son had PANDAS for several years before we knew what he had it and was a more difficult case to treat. He did require a few treatments and did relapse once along the way but IVIG has done wonders. He is thriving in 3rd grade now. I think the number of treatments a child needs may be somewhat related to how long they have had it. I am not sure it is a "cure" because he may relapse again sometime, but I know what to do and what works. I also think it is "retraining" his immune system. When he has relapsed in the past his symptoms are much milder. It is very safe too, just expensive. We premediate with benadryl, zantac, and steroids and make sure he is very hydrated and have not had side effects.

[patric]

Hi Sharon,

My son was on abx. (he also had a cough besides his PANDAS symptoms) and they seemed to have worked for him at the moment. He was on azithromycin/10days only which he started on Apr.25th. His symptoms have really faded away to just some slight anxiety right now.

 

My daughter is on Clindamycin/10days (no physical symptoms this time, just PANDAS stuff), and we are only 5 days into that. I think her symptoms *might* be improving. But not sure what's going to happen after that. My ped. just thought maybe there was some strep or something still lingering since she was getting worse (OCD, rages, etc.) and not better since her last round of abx. after a strep infection.

 

Our ped. doesn't do prophalactic abx. so I was happy to just get either of them on anything.

 

I was hoping that the abx. would clear everything and we wouldn't have to do either for a while. Dr. K is thinking that they'll be good for the summer, but as soon as school starts everything will ramp back up again. He reccomended IVIG, and said now would be a good time.

 

We are also consulting with Dr. T in NJ.

I have been trying to decide which path would be best for us. Still not sure, I change my mind almost daily.

 

I am not too far from you.....I will send you a PM.

Hi again Holly,

Just wanted to let you know to check out the post about Dr. K. toward the bottom of the page on the question "can anyone help my husband." I found it REALLY encouraging about Dr. K. and IVIG

Sharon

[Burnell]

If you has steroids, then u cannot be in the nimh

study