DOES IVIG REALLY EVEN WORK?

[Phasmid]

Ok... that's it. I am glad we're going to see Dr. K. Another patch of eyelashes missing tonight, just when they were all grown back in. AAARRRGGGGHHHH!

[momto2pandas]

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[tapiash]

My son finally hit a baseball. I wonder if it has 2 do with zithromax. He has been on 4 eight days. what do you think?

[Suzan]

momto2pandas.....

 

Wonderful update! Can I ask what dose of IVIG is Dr. B using?

 

Thanks!

[kimballot]

Mom to 2 - Thanks for the update. I am SOOO happy for you!!! Please keep us posted!

[Phasmid]

Wow, this sounds too good to be true. You're saying, all these drastic changes in a matter of 4 weeks? That is amazing. I am so happy for your family! This is what I hope for too. We, too, think that after so many years, these traits are just "him." I hope not. Can I ask your doc's name? We are in So. Cal as well. Thanks so much for posting this! And again, congrats!

[momto2pandas]

To answer some questions, dose was 1.5 g/kg for the first dose, but will be reduced to 0.75/kg for subsequent monthly doses (Dr. B's instructions). They are also on zith (250 for ds6, 200 for ds4).

 

Yes, the changes are pronounced in just 4 weeks, but keep in mind that we were (and still are, but improved) dealing with chronic sinus infections in the context of immune deficiency. I don't know if the changes in energy, mood, color, sociability, etc. are due primarily to improvement in PANDAS, or to just not feeling so dragged down and rotten with infections. Some things seem clearly to be PANDAS improvements - virtual tic disappearance. handwriting improvement, loss of OCD symptoms and stammering, physical coordination, etc. Others may not be.

 

I would love to know if kids with PANDAS and immune deficiencies respond differently than kids with just PANDAS.

 

Phasmid - the doctor I was referring to in SoCal is Dr. Greene at Beaver in Redlands. We will be getting IVIG at Beaver from now on too.

[Phasmid]

How did you get Dr. B's involvement? Had to gone to see him prior to finding Dr Green?

[dut]

Momto2pandas - I'm so very pleased for you and your children :-)

[momto2pandas]

Dr. Greene diagnosed PANDAS and treated it at first with antibiotics just during sickness/symptoms and for dental prophyaxis, which was fine for the first 1.5 years (this was just for ds6). When the infections became chronic over the winter and periodic antibiotics no longer worked (and ds4 developed PANDAS too), Dr. G sent the kids to the immunologist at Beaver, who diagnosed them both with immune deficiencies. At that point, we wanted to make sure that we saw someone with expertise in both PANDAS and immune deficiency so that we didn't make mistakes in treatment moving forward - neither Dr. Greene nor Dr. Mabudian (the immunologist) felt that they had sufficient experience to guide the treatment in such a case (dose, etc.). Dr. B gave instructions for additional tests to order and Dr. Greene ordered them, then we saw Dr. B for a consultation and got our first IVIG there, and Dr. B gave instructions for the next 6 months for Dr. G to follow in ordering additional tx.

 

We could have done phone consults with Dr. B, but since there were three of us who needed consults and insurance only covered it if we did it in-person, it was actually cheaper to travel - plus we were long overdue to visit friends in the area, so we were happy to make the trip.

 

How did you get Dr. B's involvement? Had to gone to see him prior to finding Dr Green?

[ajcire]

momtopandas, you say your kids were mild pandas. Can I ask what kind of tics and ocd they had right before the IVIG? Did you know they had sinus issues or was that discovered by Dr. B?

 

I consider my son mild pandas but my guess is everyone considers mild something different?

 

 

 

 

 

 

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[momto2pandas]

They had chronic sinus infections starting last October - and we knew it. Their sinuses were full of green stuff. Dr. B didn't discover anything with the kids that we hadn't already known; we saw him to get his direction on treatment dose, frequency, etc.

 

Re. tics, ds6 had only eye tics. Kind of a stretch and roll thing. It was not a lot, just several times per day, maybe 1-2 times per hour. Rarely, it would be quite a bit worse. Ds4 hadn't had any tics at all until the week before we saw Dr. B, when he suddenly developed the same eye tic his brother had. (Incidentally, I had the exact same tic while I had anorexia nervosa as a teenager.) Ds4's tic never came back after the IVIG. In ds6, I have seen it maybe 4 times in the last 4 weeks. They also both had sort of a stammering speech thing, ds4 quite prominently. That's also at least 99% gone now.

 

Re. OCD, ds6 had classic OCD symptoms during the episode that led to his diagnosis, but never really had those again. Perfectionistic streak, yes, moodiness, yes, but not really OCD. Ds4 had much more classic OCD stuff, insistence on stuff being done in a certain way, certain order, certain location, etc. It wasn't that much different from typical toddler stubborness and attachment to ritual. e.g. he wanted to buckle his own car seat, and if you did it instead, he would insist that you take him all the way back to the house and start again from getting ready to leave inside the house (which of course we didn't honor). If the bedtime routine was done out of the "proper" order, he would be inconsolable. Now that he's 4 I think we would have picked up that something was awry, but when it started at age 2 or 3, we didn't think that much of it until he went on antibiotics for his sinus infection and the behavior disappeared, and then returned when the antibiotics stopped - 10 times. He never had things like having to count things, germ phobia, or anything stereotyped like that.

 

 

momtopandas, you say your kids were mild pandas. Can I ask what kind of tics and ocd they had right before the IVIG? Did you know they had sinus issues or was that discovered by Dr. B?

 

I consider my son mild pandas but my guess is everyone considers mild something different?

 

 

 

 

 

 

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[tapiash]

Does anyone know where I can go in Texas for IVIg. We are fixing to start the approval proces but I am not sure where to go. I would love to go somewhere there is a pediarician on call not just a center.

 

 

 

There's an immunologist in the Dallas area I heard about. If you can't find him/her, contact me directly, and I'll check some sources, and find out for you.

 

 

I still have not heard from the person you referred me to. I think she may think I am somebody else. I looked through all the posts and did not find one about ivig in Dallas.

[ajcire]

Thanks for that explanation momtopandas. It is interesting that the tics were the same. I wonder if others with more than one child with this see the same tics... I know the eye blink is very common but you said they both do a stretch and roll kind of thing... it's all interesting.

 

My pandas ds was how you described but to a lesser degree when he was little... with things his way. I assumed it was regular toddler stuff and really don't know if it was or wasn't... like if I put his pants on for him and he said he wanted to he would take them off and redo them, same with his shoes.... If I cut his sandwich into triangles but he wanted squares that was it, he wouldn't eat it and would cry for a long time if I didn't make a new one... that stuff is all just hindsight for me as to whether it was typical kid stuff or not...my youngest who is not pandas (I hope and don't think he is) has weird things he does too... and if he doesn't buckle the carseat himself he will get hysterical as well... it's so hard at that age to figure it all out.

 

 

They had chronic sinus infections starting last October - and we knew it. Their sinuses were full of green stuff. Dr. B didn't discover anything with the kids that we hadn't already known; we saw him to get his direction on treatment dose, frequency, etc.

 

Re. tics, ds6 had only eye tics. Kind of a stretch and roll thing. It was not a lot, just several times per day, maybe 1-2 times per hour. Rarely, it would be quite a bit worse. Ds4 hadn't had any tics at all until the week before we saw Dr. B, when he suddenly developed the same eye tic his brother had. (Incidentally, I had the exact same tic while I had anorexia nervosa as a teenager.) Ds4's tic never came back after the IVIG. In ds6, I have seen it maybe 4 times in the last 4 weeks. They also both had sort of a stammering speech thing, ds4 quite prominently. That's also at least 99% gone now.

 

Re. OCD, ds6 had classic OCD symptoms during the episode that led to his diagnosis, but never really had those again. Perfectionistic streak, yes, moodiness, yes, but not really OCD. Ds4 had much more classic OCD stuff, insistence on stuff being done in a certain way, certain order, certain location, etc. It wasn't that much different from typical toddler stubborness and attachment to ritual. e.g. he wanted to buckle his own car seat, and if you did it instead, he would insist that you take him all the way back to the house and start again from getting ready to leave inside the house (which of course we didn't honor). If the bedtime routine was done out of the "proper" order, he would be inconsolable. Now that he's 4 I think we would have picked up that something was awry, but when it started at age 2 or 3, we didn't think that much of it until he went on antibiotics for his sinus infection and the behavior disappeared, and then returned when the antibiotics stopped - 10 times. He never had things like having to count things, germ phobia, or anything stereotyped like that.

 

 

momtopandas, you say your kids were mild pandas. Can I ask what kind of tics and ocd they had right before the IVIG? Did you know they had sinus issues or was that discovered by Dr. B?

 

I consider my son mild pandas but my guess is everyone considers mild something different?

 

 

 

 

 

 

I haven't posted an update in a couple of weeks, but wanted to add my 2 cents in here. A month ago my children were what we considered to be mild PANDAS - one of them so mild that we weren't even sure about the diagnosis. Neither met any DSM criteria for any kind of diagnosis. We were not at the point where we would have pursued IVIG for PANDAS alone. However, we found out that they were immune deficient - pretty badly so, and that they had chronic strep not eradicated by a dozen courses of antibiotics, and so we basically had no choice but to go with IVIG.

 

We did IVIG with Dr. B 4 weeks ago. Wow, what a difference. The first 2 weeks were rocky - we saw things that worried us, as well as things that were positive. However, the difference is life altering. By a month ago, I had come to dread picking the kids up from school in the afternoon - not because of disabling OCD or tics or anything, but because of the mood crapshoot - would they drag and whine and and fuss all afternoon and make me exasperated and exhausted, or would they be ok? As soon as they woke up each day I would look at their eyes (circles, pupils, etc) with trepidation, to get a read on how our day would be. If I saw bad news, I'd sink. Every time I accepted an invitation for a playdate I would have to wonder if they would be in an acceptable place when the day actually came, or if they might get unlucky and wind up alienating their friends with a crappy mood. I doubted my parenting. But since the IVIG, they come home from school each day with great big smiles. They make it through each day with good energy. They cooperate (age-expected). Whining is virtually absent. Tics are completely absent. The still have their moments (what 4 and 6 year olds don't?), but everyone comments on how different they are - the light in their eyes, their energy levels, their eye contact, their color, their social engagement, their speech - and they were "fine" with respect to these things in the first place. Even their physical coordination is better. I had always thought my kids just weren't particularly physically coordinated - just a touch below average, no big deal. Now, ds6 is suddenly making baskets in a regulation hoop, riding a bike without training wheels, taking first place in several events (including hurdles) at track, etc. It turns out that he's very athletic! My 4 year old WANTS to write, which he was always too frustrated to do before. He colors much more within the lines, which he never even tried to do before. He socializes with a broad group of kids at school instead of just his best friends. Thinking about all of the differences - the things we thought were "just them" and that we were fine with, not realizing that their "real selves" were compromised - makes me want to cry.

 

And still, I think we have even better to look forward to. At ds4's 4-year check-up earlier this week, his ped said that his sinuses, albeit improved, are still swollen, and that we can expect further improvement with time. If his sinuses are still inflamed, I'm guessing that his brain might still be as well. (He doesn't have any allergies, so inflammation=infection for him.) Both kids are going for another monthly IVIG next week, and will continue for a few more months.

 

To make matters even better, their IVIG treatments are being covered by the insurance except for a $40 co-pay! And the insurance has agreed to pay for up to 11 treatments for ds6 and 12 for ds4! We had expected AT LEAST to pay for 20% after the $1000 deductible. Even better, they will get the rest of their treatment moving forward right here in our area in Southern CA. Their pediatrician, who is also an infectious disease specialist (and who diagnosed PANDAS in the first place), was very excited about the improvements, congratulated me on having pursued the situation aggressively, and has agreed to order all of their treatment and monitor their conditions locally from now on in accordance with Dr. B's guidance.

 

I don't expect that this will be the end of PANDAS for us, but at least I feel that we are on the right track and that we know what to do moving forward.

[EAMom]

Mom2pandas...wow.

 

Can you write up your story (and kids' story) (updated if you haven't already) and send it to Diana?

Edited May 22, 2010 by EAMom