Jump to content
ACN Latitudes Forums
  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

Sign in to follow this  
Michel12

What do I do next?

Recommended Posts

So I failed the IvIg it did not do anything. What do I do now? I'm on minocycline and keflex right now as far as antibiotics. Do I change them? I have seriously had it I feel I need ikmmediate treatment because this has ruined my life but I want to do the right thing. Please dont tell m e to pursue lyme.

Share this post


Link to post
Share on other sites

You experienced no impacts/benefits from IVIG at all? Sorry, I can't remember your whole history or what other routes (besides the abx you note above) you've attempted.

 

Please do not give up. There's an answer for everyone, I'm convinced. It's just that responses and achievements are so varied among the sufferers of this condition.

Share this post


Link to post
Share on other sites

How long ago was the IVIG?

It was march 16th i think and it was my third double dose one.

You experienced no impacts/benefits from IVIG at all? Sorry, I can't remember your whole history or what other routes (besides the abx you note above) you've attempted.

 

Please do not give up. There's an answer for everyone, I'm convinced. It's just that responses and achievements are so varied among the sufferers of this condition.

Nothing that is noticeable it seems antibiotics i have tried are the minocycline im on now the keflex which im on augementin which I tried and steriod which I tried for a month taper down. I have also had my tonsils out before the IVIG. If thgere is any improvement from the IVIG it is barely noticeable.

Share this post


Link to post
Share on other sites

 

How long ago was the IVIG?

It was march 16th i think and it was my third double dose one.

You experienced no impacts/benefits from IVIG at all? Sorry, I can't remember your whole history or what other routes (besides the abx you note above) you've attempted.

 

Please do not give up. There's an answer for everyone, I'm convinced. It's just that responses and achievements are so varied among the sufferers of this condition.

Nothing that is noticeable it seems antibiotics i have tried are the minocycline im on now the keflex which im on augementin which I tried and steriod which I tried for a month taper down. I have also had my tonsils out before the IVIG. If thgere is any improvement from the IVIG it is barely noticeable.

 

So my pediatrician actually told me there was a good chance of the IVIg not working and not to get upset if it doesn't. I have had the illness for 10 years. I have heard from several doctors that Plasmapheresis is a band-aid and the illness. That only leaves rituximab but we do not want to do that. Are there any other options? I'm going on paxil now from clomipramine so I hope that works. I was on a low dose antideppresent while I was doing the IVIG do you think I had to be more stable on the antideppresent to feel the IVIG effects?

Share this post


Link to post
Share on other sites

I'm sorry that I don't really have any answers, I don't think. I would just advise you to go low and slow on any psych drugs . . . start the dose low and don't increase it too rapidly.

 

Also, know that, in our experience, time is a necessary component of successful treatment. I know you've been dealing with this illness for a long time, and everyone is impatient for relief, but I think time is especially necessary for folks who have suffered with the condition longer without appropriate intervention. Our DS had PANDAs/PANs for at least 6 years (and we suspect longer) before we got a proper diagnosis, so his climb back out from the depths of his illness has been longer than it was for some younger kids for whom the diagnosis and treatment were made much quicker. We're on Year 4 of The Return to Health, and things are going well, but I'll say that the first year was especially dicey, and Year 2 had some significant ups and downs, as well.

 

Stay strong!

Share this post


Link to post
Share on other sites

I am assuming you have blood work to rule out most other bacterial or viral infections? If an infection is undiagnosed or unresolved prior to IVIG, I have heard that you may not see any results or the results you do see do not last long.

 

We are holding off on IVIG until we see what kiddo is like with almost normal viral titers, then if she is not stable, we will pursue IVIG. It can be very frustrating investing that much time, energy, hope and money into a treatment and have it not work. I am sorry.

Share this post


Link to post
Share on other sites

I am assuming you have blood work to rule out most other bacterial or viral infections? If an infection is undiagnosed or unresolved prior to IVIG, I have heard that you may not see any results or the results you do see do not last long.

 

We are holding off on IVIG until we see what kiddo is like with almost normal viral titers, then if she is not stable, we will pursue IVIG. It can be very frustrating investing that much time, energy, hope and money into a treatment and have it not work. I am sorry.

Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long.

Share this post


Link to post
Share on other sites

 

I am assuming you have blood work to rule out most other bacterial or viral infections? If an infection is undiagnosed or unresolved prior to IVIG, I have heard that you may not see any results or the results you do see do not last long.

 

We are holding off on IVIG until we see what kiddo is like with almost normal viral titers, then if she is not stable, we will pursue IVIG. It can be very frustrating investing that much time, energy, hope and money into a treatment and have it not work. I am sorry.

Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long.

Also im wondering but I did the steriod at 40mg and I weigh 270 pounds do you think that it wasnt enough for my body weight? It kind of helped but benefit was not as good as when I first took minocycline

Share this post


Link to post
Share on other sites

 

 

I am assuming you have blood work to rule out most other bacterial or viral infections? If an infection is undiagnosed or unresolved prior to IVIG, I have heard that you may not see any results or the results you do see do not last long.

 

We are holding off on IVIG until we see what kiddo is like with almost normal viral titers, then if she is not stable, we will pursue IVIG. It can be very frustrating investing that much time, energy, hope and money into a treatment and have it not work. I am sorry.

Yes I have had many viral or bacterial tests and they always come back negative. Im not sure all of the ones ive gotten though but weve had a ton of bloodwork and ive had the lyme test at least 6 times. Right now I feel terrible. I feel so lightheaded im almost feverish. My head hurts and I can barley think. I'm on two antibiotics which ive been on for a yeatr so how can there still be an infection? We need to do somehting because im afrai this is going to be permanent and has been undiagnosed for so long.

Also im wondering but I did the steriod at 40mg and I weigh 270 pounds do you think that it wasnt enough for my body weight? It kind of helped but benefit was not as good as when I first took minocycline

 

I also keep perseverating about my illness and can't stop and I get os angry at my parents I yell at them. Feeling bad for so long without knowing what is oging on has drven me nuts and im sure I wasnt the longest one undiagnosed and pandas is so new but im afraid its going to be permenant. DR. L sshowed me a ptient she calls her miracle patient who was sick for 15 years who nothing worked for him until he did rituximab. In 1-3 months he was completely changed. She said that no one wants to talk about their illness after they get better. For me I find that hard to believe because I perseverate about it all day.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×
×
  • Create New...