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First, I want to say what a strong, caring Mom you are! I read your recent posts with tears in my eyes! My daughter is no comparison with the level of ocd, but wanted to share our experience. She had IVIG in June 2009. And though it decreased a lot of the other panda-ish behaviors, it only helped a little with her ocd. She then had another mid April (10 months later) and it really decreased the ocd. We did IVIG #3 in early July and returned home to receive a positive Igenex lyme test. It might be in your best interest to have the test done before proceeding with any more infusions. Also--it was on the 10th week after the IVIG in April that we saw the most gains.

Melinda

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We're 8 weeks post-ivig today. He was subdued the first week, hyper/manic the second. Weeks 3-5 got way worse. Weeks 6-8 things are back to about where they were the day before IVIG. It's discouraging, isn't it? He responds phenomenally to prednisone (and also had positive results from pex, we just couldn't keep him away from exposure), so we had high hopes for IVIG. I suppose it's possible it could have benefits in the long run. It just wasn't what we expected so far.

 

On the plus sign, OCD is sub-clinical. But it was low beforehand, got worse during the post-treatment ramp up, and is now back to about where it was when this episode started. The muscle pain went away for 4 weeks post-ivig, which was great, but it's back. The mania, mood lability and worst of all, the brain fog, aren't improving. The interesting thing is that everything significantly improves within an hour of 200mg of motrin. So we know whatever is going on is inflammation based. Would lyme respond this way?

 

We're not in your shoes. My son is functioning and interacting with peers and will start school in 3 weeks. We have very little anxiety. It's the brain fog that's our biggie. We see our Pandas doc in 2 weeks. At that time, I'll hopefully get sign off on the Igenex paperwork to test for Lyme (but will not be going off abx). The trouble is DS has high C3d immune complexes, which may give a false negative, so the test results may not be reliable. I also hope to discuss a switch from Augmentin 800mg to XR.

 

A long way to say you're not alone. Something is causing continued inflammation. Now I just have to figure out what. Hang in there. I often feel that the trial and errors of this group are moving medical knowledge along, in a clunky way, as fast as researchers and doctors are. This is more than one of those "I'm so sorry let me give you a hug" support groups (not knocking those comments - please don't misunderstand). But this group is empowering. It's like we're all detectives, sharing clues. One sees the elephant's tail, another sees the trunk. Together, we'll get the elephant out of the room. It just isn't easy. This disease isn't for sissys, that's for sure.

Edited by LLM
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Hi Melinda, Thanks for those words of encouragement. I really needed them this AM. Today is day 11 of treatment. I don't see my son putting in the efforts he needs to get better. It is really discouraging, but I am learning I can't control his actions. If he doesn't do the work I will have to accept it and go from there. We did see a Lyme Doc. but I didn't know we were suppose to wait at least 12 weeks post IVIG. We did the Igenex test at 7 weeks post IVIG, so we need to redo it when we get home. Right now he is on 500 mg Clarithromycin 2 x a day and 500 Augmentin. We are switching to Augmentin only in a day. Dr. K. wants to go to 500 mg a day, but I'm going to beg him to go higher.

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Hi, we had one high dose ivig and I can say I could have written ur exact same post a year ago. By week 12 though she seemed better but not near Where she is today. She started to relaps around week 20 very badly so we started monthly ivig. Lower dose becuz she had a bad reaction to the intial ivig. We have slowly increased her dose over tha last year. I can say that after a cold or virus, I can see the ivig stop symptoms completely. WE are moving to every 21 days to ensure we are redirecting her autoantibodies at all times. My dd appears to have an autoimmune disease which needs constant ivig to manage the symptoms. Hey guys where are Dr B's patients. - we never hear from them any more Lauren J, ellen, coco, and many more!!!! Are the IVIG's every eight weeks helping a lot!! I know Melanie, peglem, shaesmom, and myself are seeing improvement with monthly ivig. My dd is night and day from last May, still some minor tics and ocd but the healing is obvious. Her immune doc says her IGGs must remain above 1700 to manage redirecting her autoantibodies so she receives ivigs at an autoimmune dose, every 21 days. We will be measuring her IGG's to ensure she is always above 1700 iggs for the next two infusions every week. If her level ever drops below 1700 the immune doc will increase dose until we have the right igg levels consistent between infusions. I think for some kids this is a chronic condition, and more frequent ivigs put the disease under control but I need more parents, like Dr B's parents, to chime in hear if they agree. My dd did not see huge gain (small every month) till about 4 to 6 months, with a set back once at 7 month due to high fever, lung and sinus infection. Maybe Dr B's patients are out enjoying the summer this summer. I hope so!!

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Hi Joan!

We also did one round of IVIG in the Spring. We are going on 16 weeks post treatment and feel similar to you with a lack of results. We did experience a decrease in OCD symptoms, but fortunately, the OCD was never over the top -- so it also makes it hard to say whether I'm really seeing a decrease or not, but my gut says that part is better. My son's tics are about where they were, maybe slightly better. But as always, there are good days and bad days, so I feel like it's hard to say and even harder to attribute to the IVIG.

So in the end, we feel that we didn't get much of a change from the 1st treatment and find ourselves struggling with where to go next.

I had no idea that people were doing them so frequently, makes me wonder if we need to move forward with another round.

Thanks to "nevergiveup" for your post -- it was enlightening and makes me wonder about the autoantibodies and how strong they are. Can I ask what helped you to determine there is definitely an autoimmune disease at play? Did you have immune system test results that showed low levels, etc.? We just did blood work so I'm curious to know where the levels were before and if you saw a direct correlation between the symptoms and her IGG levels.

 

Also, what is the Igenex test? Should this be something I should pursue?

 

Thanks for the input!

I love this forum!!!

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My ds10 is a patient of Dr. B's. I can't say we are thoroughly enjoying our summer, but it is far from where we were in May before we had IVIG. You might remember us as the only Dr. B. patient not to get insurance coverage and paid out of our pocket for it. I just had to call the office today to cancel his appointment on Monday and Tuesday of next week for his 2nd IVIG because we are still fighting insurance. Since the infusion, it has been your typical roller coaster ride. At his worst (in May before IVIG) he had thoughts of self harm and suicide. He was also a rager. He has no signs of either anymore, Thank you God. He is far from 100% but it is so hard to ask for 100% when I feel blessed that those horrible thoughts are gone! Would I be getting the second IVIG on Monday if I could? You bet I would, but I can't, so we will have to try other avenues in the meantime. He had his tonsils out in July and we will be seeing Dr. Jones (LLMD) in September. Nevergiveup, that is a perfect name. I will never give up until I get my son back. We are enjoying moments. We take things day by day.

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Hi, we had one high dose ivig and I can say I could have written ur exact same post a year ago. By week 12 though she seemed better but not near Where she is today. She started to relaps around week 20 very badly so we started monthly ivig. Lower dose becuz she had a bad reaction to the intial ivig. We have slowly increased her dose over tha last year. I can say that after a cold or virus, I can see the ivig stop symptoms completely. WE are moving to every 21 days to ensure we are redirecting her autoantibodies at all times. My dd appears to have an autoimmune disease which needs constant ivig to manage the symptoms. Hey guys where are Dr B's patients. - we never hear from them any more Lauren J, ellen, coco, and many more!!!! Are the IVIG's every eight weeks helping a lot!! I know Melanie, peglem, shaesmom, and myself are seeing improvement with monthly ivig. My dd is night and day from last May, still some minor tics and ocd but the healing is obvious. Her immune doc says her IGGs must remain above 1700 to manage redirecting her autoantibodies so she receives ivigs at an autoimmune dose, every 21 days. We will be measuring her IGG's to ensure she is always above 1700 iggs for the next two infusions every week. If her level ever drops below 1700 the immune doc will increase dose until we have the right igg levels consistent between infusions. I think for some kids this is a chronic condition, and more frequent ivigs put the disease under control but I need more parents, like Dr B's parents, to chime in hear if they agree. My dd did not see huge gain (small every month) till about 4 to 6 months, with a set back once at 7 month due to high fever, lung and sinus infection. Maybe Dr B's patients are out enjoying the summer this summer. I hope so!!

 

when i saw doc b about a week ago...he said he would try to get us approved for 4 treatmenst..if the first wassn't doing what we needed..to not delay and do the second 8 weeks later....

 

will your dd have to have monthly treatment for the rest of her life...or is this something that is hopefully only for year or 2 and then taper down or eliminate them????

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I believe that there is a chance that there may be another issue if the IVIG did not work.

 

We had 2 hdIVIG's and 4 or 5 small dose IVIG's and my feelings are that if we were not getting to at least 80 to 90% and staying there then there is still a chronic issue that we were dealing with....

 

We did do the lyme and coinfection testing in both of my children. My son did have lyme disease, mycoplasma, bartonella and babesia and strep. We decided to stop the IVIG's because I believe that were creating too much herxing and our son was not doing as well. Since we stopped IVIG's 7 months ago and started treating all of the microbes, our son in now in the 90% range.

 

So, my advice to you is that if you did not see great success or sustained success with the one IVIG, then I would test a little further to see if there are some additional infections that your son may be dealing with. My fear is that some of these kids (like my son) may see a temporary success with the IVIG, but it will not last unless the underlying infection is eradicated.

 

Oh, and I just wanted to add that a positive IGG mycoplasma and negative IGM mycoplasma can still do quite a bit of damage and does not definitely mean that the child is not fighting mycoplasma.

 

These are my latest views and they are subject to change as they are continually evolving!

 

Elizabeth

Edited by KeithandElizabeth
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My doc has treated several pandas kids. Her first was 10 years ago one from the original swedo study. The kids had ivig for approx. 7 to 8 years. Lifelong, maybe just depends on symptoms and blood markers. My dd's ANA is reduced from 2560 to 160 hoping to eliminate it. Her symptoms correlate directly with an elevated ANA, she looks more lupus than Pandas on paper, but her symptoms are only tics and ocd. No other lupus signs. High anti dop 1 antibodies. My doc feels these kids have other autoantibodies some we cannot even measure at this point.

Hi, we had one high dose ivig and I can say I could have written ur exact same post a year ago. By week 12 though she seemed better but not near Where she is today. She started to relaps around week 20 very badly so we started monthly ivig. Lower dose becuz she had a bad reaction to the intial ivig. We have slowly increased her dose over tha last year. I can say that after a cold or virus, I can see the ivig stop symptoms completely. WE are moving to every 21 days to ensure we are redirecting her autoantibodies at all times. My dd appears to have an autoimmune disease which needs constant ivig to manage the symptoms. Hey guys where are Dr B's patients. - we never hear from them any more Lauren J, ellen, coco, and many more!!!! Are the IVIG's every eight weeks helping a lot!! I know Melanie, peglem, shaesmom, and myself are seeing improvement with monthly ivig. My dd is night and day from last May, still some minor tics and ocd but the healing is obvious. Her immune doc says her IGGs must remain above 1700 to manage redirecting her autoantibodies so she receives ivigs at an autoimmune dose, every 21 days. We will be measuring her IGG's to ensure she is always above 1700 iggs for the next two infusions every week. If her level ever drops below 1700 the immune doc will increase dose until we have the right igg levels consistent between infusions. I think for some kids this is a chronic condition, and more frequent ivigs put the disease under control but I need more parents, like Dr B's parents, to chime in hear if they agree. My dd did not see huge gain (small every month) till about 4 to 6 months, with a set back once at 7 month due to high fever, lung and sinus infection. Maybe Dr B's patients are out enjoying the summer this summer. I hope so!!

 

when i saw doc b about a week ago...he said he would try to get us approved for 4 treatmenst..if the first wassn't doing what we needed..to not delay and do the second 8 weeks later....

 

will your dd have to have monthly treatment for the rest of her life...or is this something that is hopefully only for year or 2 and then taper down or eliminate them????

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My dd started with a pandas doc and a one time infusion. Cannot say I was satisfied, from one ivig, cuz my dd had a horrible overnight occurance and looked very SC. So with SC more than one IVIG is needed. But she didn't receive another ivig until 5 months later. At that point she had an immune deficiency (low IGG and low IGM) diagnosed so monthly (28 days) was allowed by insurance. Since I was most concerned about her autoantibodies and Pandas I continued to consult docs. Dr B was a good option and we would have liked to go with him but found expert locally who worked with kids from Swedo's study 10 years ago, Obviously she has a different protocol than Dr. B but after looking into lupus and other autoimmune diseases (CIPD) I felt this protocol may work well. So do the docs in my family. Looking to eliminate tics and all residual ocd. With infection she will relapse so hopefully with the change to every 21 days, ivig will minmize inflammation. If not will try Dr B's protocol. I know Melanie's son Danny does high dose every 21 days also. I believe this is the dose leading immunologists are also using for autism now. I know they are seeing it very helpful. It is for ADEM, MS, Lupus, CIPD, and other autoimmune skin conditions. Dosage just depends on how fast the kids eat up the globins. (Maintain IGG levels at 1700 or above at all times) Obviously, if they can eliminate symptoms at a lower dose that's better on side effects for the child. My dd burns up the iggs pretty fast cuz she is an athlete. My doc says with low dose ivig most see a benefit for approx 9 days after ivig and then symptoms return. So higher more frequent doses are needed. But as coco stated her dd didn't do well this way, so I think it depends on the child, the immune reaction the ivig is creating and who knows what yet??? This protocol works for several I know, but not all.

Hi Joan!

We also did one round of IVIG in the Spring. We are going on 16 weeks post treatment and feel similar to you with a lack of results. We did experience a decrease in OCD symptoms, but fortunately, the OCD was never over the top -- so it also makes it hard to say whether I'm really seeing a decrease or not, but my gut says that part is better. My son's tics are about where they were, maybe slightly better. But as always, there are good days and bad days, so I feel like it's hard to say and even harder to attribute to the IVIG.

So in the end, we feel that we didn't get much of a change from the 1st treatment and find ourselves struggling with where to go next.

I had no idea that people were doing them so frequently, makes me wonder if we need to move forward with another round.

Thanks to "nevergiveup" for your post -- it was enlightening and makes me wonder about the autoantibodies and how strong they are. Can I ask what helped you to determine there is definitely an autoimmune disease at play? Did you have immune system test results that showed low levels, etc.? We just did blood work so I'm curious to know where the levels were before and if you saw a direct correlation between the symptoms and her IGG levels.

 

Also, what is the Igenex test? Should this be something I should pursue?

 

Thanks for the input!

I love this forum!!!

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