IVIG w IV Steroid (Simultaneously)

[michelew]

My son is currently in a major flair. We are trying to get him the best possible treatment right away. We would love to do PEX, but realize this could take a long time to set up, so we're considering doing IVIG with Steroids, in hopes this will be as effective. This is a recommended first-line of treatment for autoimmune encephalitis, according to the recently posted report entitled: The Latest Research on Autoimmune Encephalitis by Finn Somnier. You can find this research on the PANDASNETWORK.ORG website on their home page. The report acts as though this is as effective as

 

The dosing we are considering would be .4g/kg/day X 5 days of IVIG & Methyprednisolone at 30 mg/kg X 5 days. The IVIG dosing is similar to the recommended dosing for HD IVIG, only in this scenario it is spread over 5 days. We did HD IVIG for my son in October of 2011, and it was about the same dose, but was administered over two days. I'm completely comfortable with the IVIG dosing, but just would like to hear feedback regarding the steroid dosing, and whether or not anyone out there has ever followed this protocol.

 

Thanks!

 

Michele

[PhillyPA]

Yes we did a similar protocol. We did hd ivig with 1 whole gram (1000mg) of iv steroids. That dose of steroids you are getting is not very big. The bonus of the steroids is that it keeps side effects of ivig to minimal or none at all. We did this every month for almost a year.

[michelew]

Thanks, PhillyPa. Did this help your child?

 

Also, the steroid is actually 30mg/kg, so for my child, I believe that would actually come out to a little over a gram. Also, the protocol calls for this for five days straight, along with the HD IVIG spread out over the five days. I'm wondering if you do 1 g for five days, if this would require tapering?

[PhillyPA]

We did each treatment over two days. He got one gram of iv steroids per day for a total of 2grams of iv steroids per ivig treatment. It did not require tapering.

 

I hesitate to post on these boards because I don't really think my child had pandas. I think it's something else. I think cases and causes are different. I think you should try it(only because it seems you are leaning that way) and see what happens. If, after treatment, the positives outweigh the negatives - keep on going. If you see more negatives than positives -stop. You will know what to do. The answer will be right in front of you, living with you, everyday.

 

 

Good luck on your journey.

[michelew]

We did each treatment over two days. He got one gram of iv steroids per day for a total of 2grams of iv steroids per ivig treatment. It did not require tapering.

 

I hesitate to post on these boards because I don't really think my child had pandas. I think it's something else. I think cases and causes are different. I think you should try it(only because it seems you are leaning that way) and see what happens. If, after treatment, the positives outweigh the negatives - keep on going. If you see more negatives than positives -stop. You will know what to do. The answer will be right in front of you, living with you, everyday.

 

 

Good luck on your journey.

 

 

Hi, PhillyPA.

 

With your son's monthly IVIG, did he receive his treatments exactly one month later to the day, or did he receive his treatments every 21 days? I've noticed how some doctors recommend receiving IVIG every 21 days, since it is believed IVIG only stays in the body for about that length of time.

 

My son's doctor is planning on following the HD IVIG protocol, along with 1 gram of IV steroids for each of the two days. She just has not decided how often to repeat the procedure, so I just was curious to learn exactly how often your son received his treatments.

 

Also, I assume your son must have improved considerably since you stopped his treatments after about 1 year. Is he currently taking any medications, or receiving any other type of treatment to prevent a relapse?

 

Thanks again for any insight you are willing to share. :-)Michele

[PhillyPA]

My son received treatments exactly four weeks apart.

 

He had to stop due to complications. Did I see improvement - yes. Sometimes dramatic. Make sure you get IgA levels checked before going ahead. You want to make sure your child does not have low IgA or complications can happen. Get this check regularly throughout treatment. Will I ever do ivig again - no. The benefits for him do not outweigh the risks. He never came back to himself. It didn't make him recover. IVIG caused more weeks of suffering than happiness for him. The tease was the glimpses of dramatic improvement.

 

Actually, the most helpful thing for him has been a drug called Namenda. For us, the drug has truly been a miracle and I am excited to see how far it will take him. But again, I highly highly doubt my son's illness is pandas. I believe if your child has traditional no-nonesense pandas, he/she will get better and better and recover with treatment like antibiotics and steroids. Maybe a few ivigs at most. If your child doesn't get better your child has an underlying condition of something else. I am certain my theory will not be a popular one on this board. Perhaps pandas has triggered an underlying condition, who knows. All I am saying is that if you don't see a continual upward trend with ivig, don't waste time. Move onto trying something else. Keep on searching.

 

All of that being said, one could say that from a research perspective that the long term results of the ivig kicked in at the same time as that the Namenda was started. Anything is possible. One could reasonable state that after 6 months of no ivig his body is now resetting and the good things we see are because of the ivig. A researcher would probably put that in the scenerio of possibilities. However, as his mom, I don't think so. I think that casual relationship is far reached. I think it is the Namenda.

 

Good luck and don't lose hope. Keep on trying. I hope ivig is your child's cure. It is worth a try.

[FallingApart]

We did IVIG w IV Steroids about 12 times over an 18 month course. I don't remember what the dosage was because DD was 3 at the time. Because she was 3 IVIG was traumatic for her (and the whole family) It involved an overnight stay in the pediatric ward. Thus, we tried to string the IVIG treatments out as far as possible. We went as little as 2 weeks up to 40 days.

 

Then our insurance company required us to see a Naturopath in order to continue paying for the treatments. The Naturopath was able to get the same results as IVIG with just homeopathic strep. Like Philly PA, was it the 18 months of IVIG or was it truly the homeopathic strep? Don't know for sure. I only know that we haven't been in the hospital since then. DD still flares and can get to the point where I would like to do IVIG but then I usually remember that I have missed something in our current protocol.

 

I will say that the ped and I just discussed putting IVIG on the backburner as a soon to be treatment because of the current flare we are in.

 

Good luck to you.