IVIG DOSAGE AND HOW OFTEN

[coco]

Hi friends - I was debating on whether or not to post this, as it is never my intent to come across as "announcing" any "eureka" protocol, as many of us have found physicians who are treating a little bit differently with good results. So, please take this info as more food for thought as we go through this miserable journey.

 

Here's the scoop on dosages/how often, at least since last night! After another mom and I have had many back and forth conversations with Dr. B regarding dosages and comparing to the Dr. K dosage, his protocol vs. Dr. K's, re-explaining the half-life of gamma, etc., Dr. B once again called Dr. K on Wednesday about THE DOSAGE and spoke at great length. Dr B is "fluent" in immunology (excellent doctor) and can perfectly explain why 1 gram every 30 days is the scientifically sensible way to go, but he was reminded that we are using gamma for an off-label disorder, Pandas, and the same principles do not necessarily apply nor do they make entire logical sense. Dr B gallantly said to me on the phone, "I yield to Dr. K, he has been doing this for many more years than I have, but I want to help as many children get well as possible, so I will adapt and listen to whatever scientific, anecedotal and parental evidence there is to do that." He went on to say that right now the most frustrating part is that there is NO PROTOCOL for this and we are all somewhat flying by the seat of our pants, even Dr. K, and he was really pushing hard for future consortiums where pandas docs can exchange information, lecture on specific pandas issues, review clinical observations, etc...and we all completely agree!! Sadly our kids can't wait for all that data so we go with what we know, or think we know.

 

Ok, with all that backup info, Dr B is more than willing to go to the higher 1.5 dosage (that Dr. K does) for all pandas patients. I do not know if Dr. B will do 750 the first day and 750 the second day or do it all in one sitting. Since my daughter has had the procedure 5 times already, he feels ok in giving it to her all in one day, slowwwwww drip. For a first timer, I am not certain and it may depend on each case. Dr. K and B also agreed that every 60 days would be the current best way to go with regards to "How Often" and that means Dr. K moved a bit on his every 3-4 months as needed and Dr. B moved from his "every thirty days" protocol.

 

Sorry for the long note but if you're anything like me, I am always interested in the backstory of all these issues and decisions. It helps to understand that there are really good doctors out there trying very hard to get it right, not knowing each answer, but willing to move forward in the hopes of healing our kids. Thanks for letting me share!

[nevergiveup]

Coco, and all those with Dr. B,

 

What type of success has Dr. B had with his previous protocol? (lower monthly doses) Has he not been seeing improvement with his patients. I clearly understand the need to up the dose if the patients need a higher dose. But is he agreeing that lower dose monthly ivig does not help pandas or has he had some success. My dd gets lower monthly dose and I would like to know if she should have a higher dose. Again, my question is has he seen success with some patients with lower dose and maybe others need higher dose. Or is he saying he has seen no success with lower monthly dose???

 

Thanks for responding.

[KeithandElizabeth]

Thanks so much for sharing!! I think we need to learn as much as we can from each other.

 

We originally did the one big Dr. K dosage and then went to monthly smaller doses with our immunologist. After consulting with Dr. K this past week, we are going to switch and do the higher dose at less frequent intervals.

 

Our kids happen to be the guinea pigs right now. At least there is more knowledge now than there was 5 years ago!

 

Thanks again,

 

Elizabeth

[coco]

Coco, and all those with Dr. B,

 

What type of success has Dr. B had with his previous protocol? (lower monthly doses) Has he not been seeing improvement with his patients. I clearly understand the need to up the dose if the patients need a higher dose. But is he agreeing that lower dose monthly ivig does not help pandas or has he had some success. My dd gets lower monthly dose and I would like to know if she should have a higher dose. Again, my question is has he seen success with some patients with lower dose and maybe others need higher dose. Or is he saying he has seen no success with lower monthly dose???

 

Thanks for responding.

I can only speak to what we are seeing with our daughter and how she clinically presents after having both the Dr. K high-dose 2-day and 4 monthly 1.0 gram doses with Dr. B. We are seeing progress, but after all these ivigs we would have hoped to see a more steady trend upwards. My dds IGG levels now are in the high-normal range and her pneumo strep 14 serotypes are almost all very healthy, so that has definitely improved her overall immune health. But for lack of a better word, there appears to be some "magic" with what occurs in the bone marrow at that higher dose level. And waiting 60 days to repeat that dosage rather than doing a lower-dose monthly seems to work. Dr K has not been able to explain that pnenom to me, but it appears to gleen the most success. He has a thought that doing monthly may actually prolong pandas symptoms...JUST A THOUGHT. I do not want to create the impression that folks who are doing monthly treatments are all wrong and that it won't work, it may well work...but this is the direction Dr. B is moving towards now.

[sf_mom]

CoCo... Your post is appreciated.

 

Our son has been under Dr. K's care and we have done three IVIGs at the higher dose every 8 weeks.

 

First treatment: Saw some back sliding at 6 weeks after exposure to strep.... personally, I think we would have had back sliding even if he had not been exposed to strep. He just needed another treatment but even with backsliding he was a lot better than sudden on-set and being on antibiotics for a month prior to IVIG.

 

Second treatment: Our son was struggling a little with daily complaints of headaches, stomach aches, mood liability until we upped his antibiotic (prior IVIG we had him on and off higher dose antibiotics due to illnesses in the home). We saw a huge improvements week 4 to 7.5. At week 7.5 we saw a blip of hopping while walking a couple days, urinary frequency (only one night) and flairs of coughing.

 

Third treatment: We have kept him on the higher dose antibiotic. Currently, he has no obvious OCD, no major TICs, an occasional cough and an occasional flair of eye blinking. We've had couple of times of mood liability but he has either been tired or hungry.... so maybe normal stuff. One night he woke up complaining of a bad dream. At this point we remain hopeful another treatment is not necessary but we won't know for sure until he is further from treatment.

 

My dream treatment with regards to IVIG would have been: IVIG over 2 days with higher dose antibiotics: additional treatments at week 6 post first treatment, week 8 post second treatment...... we are trying to make it to week 12. I feel like if we get beyond week 12, his own immune system will take over and then we'll just wait and see. With his current symptoms, we do not feel another treatment is necessary but will gladly retreat if things change.

 

As for antibiotics, I'd like to keep it up until we are confident this is behind us and we will slowly lower his antibiotic over the next year to 375 m.g. and then 250 m.g. as long as there is no symptom increase. We also plan to test his ASO titers to see where they are and which direction they are heading. Last tested they were 205 in August. We will re-test CaM Kinase when he is 6 months and 1 year post his last treatment of IVIG.

 

-Wendy

[memom]

Coco,

 

Thank you for this post. Also, thank you for helping to get two physicians talking who are treating a lot of our children to come together in their attempts to best treat our kids. (We especially will benefit as we are working with Dr. B. and have consulted with Dr. K. They were until now not on the same page. We have another visit with Dr. B. in a few weeks and wonder what we will hear). Dr. K. feels dd needs IVIG now with repeat expected. Dr. B. only 5 hour drive. Dr. K. plane ride.

Thanks again for facilitating change.

 

Ellie

[melanie]

Hi friends - I was debating on whether or not to post this, as it is never my intent to come across as "announcing" any "eureka" protocol, as many of us have found physicians who are treating a little bit differently with good results. So, please take this info as more food for thought as we go through this miserable journey.

 

Here's the scoop on dosages/how often, at least since last night! After another mom and I have had many back and forth conversations with Dr. B regarding dosages and comparing to the Dr. K dosage, his protocol vs. Dr. K's, re-explaining the half-life of gamma, etc., Dr. B once again called Dr. K on Wednesday about THE DOSAGE and spoke at great length. Dr B is "fluent" in immunology (excellent doctor) and can perfectly explain why 1 gram every 30 days is the scientifically sensible way to go, but he was reminded that we are using gamma for an off-label disorder, Pandas, and the same principles do not necessarily apply nor do they make entire logical sense. Dr B gallantly said to me on the phone, "I yield to Dr. K, he has been doing this for many more years than I have, but I want to help as many children get well as possible, so I will adapt and listen to whatever scientific, anecedotal and parental evidence there is to do that." He went on to say that right now the most frustrating part is that there is NO PROTOCOL for this and we are all somewhat flying by the seat of our pants, even Dr. K, and he was really pushing hard for future consortiums where pandas docs can exchange information, lecture on specific pandas issues, review clinical observations, etc...and we all completely agree!! Sadly our kids can't wait for all that data so we go with what we know, or think we know.

 

Ok, with all that backup info, Dr B is more than willing to go to the higher 1.5 dosage (that Dr. K does) for all pandas patients. I do not know if Dr. B will do 750 the first day and 750 the second day or do it all in one sitting. Since my daughter has had the procedure 5 times already, he feels ok in giving it to her all in one day, slowwwwww drip. For a first timer, I am not certain and it may depend on each case. Dr. K and B also agreed that every 60 days would be the current best way to go with regards to "How Often" and that means Dr. K moved a bit on his every 3-4 months as needed and Dr. B moved from his "every thirty days" protocol.

 

Sorry for the long note but if you're anything like me, I am always interested in the backstory of all these issues and decisions. It helps to understand that there are really good doctors out there trying very hard to get it right, not knowing each answer, but willing to move forward in the hopes of healing our kids. Thanks for letting me share!

 

 

Im going to chime in here

 

I agree with everyone that all of the MDs are doing something a little different.It depends on the type of mD and what the childs dx is When we 1st had dannys IVIG in Sept he was with a neurologist,He infused in the hospital for 3 days I think it was 60 grams?

This time hes using a immunologist and shes using privigen 10% Liquid 60 grams=600ml to be infused 3-4 hrs once every 3 weeks via vista pump .

 

So Im not sure whos right or whos close to being right I guess time will tell.

I know one thing we as parents of these kids need to continue to talk to eachother and help anyone who asks.

This is a diffucult illness to deal with. I hope we all find the exact treatment but I have a feeling its going to be different for each kid.

 

I hope we all have a nice day I sure can use one

 

Melanie and Danny

 

Dx is selective Ig deficiency

cronic condition is PANDAS

[bronxmom2]

Hi Coco--

Thanks for posting this!

Do you know if he is changing his protocol immediately?

We are scheduled to do IVIG Wednesday-- with you I think!-- I am wondering if we are all going to get the higher dose?

[dcmom]

So- what are the results.

 

SF Mom- I know things are improving for you.

 

Coco and Keith and Elizabeth?

 

I am really interested, as if we relapse post pheresis, we will probably head toward IVIG. But, I have to say, until you have remission for over a year- its still all unknown....

[KeithandElizabeth]

Well.......

 

We originally did the 1.5 dose and then followed up with small monthly doses. We consulted with Dr. K this past week and he definitely convinced us that the 1.5 dose, less infrequently was the way to go. We felt that we saw an immediate boost with the small doses, but it wasn't the same effect as the larger dose. On top of everything, our son got break through strep throat 2 weeks ago. He regressed and then yesterday he did a complete turn around and he is coming back.

 

Dr. K was explaining, and I am trying to remember his words, that unless you do the 1.5 dose, you will not shut down the bone marrow. When the bone marrow is shut down completely, then the body sends a message out that it needs new antibodies. Then the body begins making new, good, antibodies. He feels that the small dose doesn't achieve this effect.

 

Dr. K also thought our 11 year old daughter has PANDAS. She is so mild and high functioning compared to our son. We are trying to get an IVIG for her locally, and we plan to start with just the one dose of 1.5 and then in Dr. K's words "wait and see" for 3 months.

 

Elizabeth