IVIG with Dr. K last week

[HT's Mom]

Just an update for those interested or thinking about IVIG that haven't done it yet:

 

Background - DS16 dealing with tics, lost focus, and intrusive thoughts since about january. He had debilitating PANDAS /OCD five years ago that cleared for the most part with abx alone. No positive strep test this time, but lots of exposure. Positive mycoplasma, treated with zith.

 

I flew to Chicago with him last week for IVIG with Dr. K. We had had phone and email consultations previously, and my son wanted the earliest possible date once we told him about the treatment back in early April. We met with Dr. K on Wednesday afternoon, and he is as nice and great with the kids as all have said. He is really quite a character. He hardly spoke to me but spent the hour talking to my son in a funny/serious way that was very disarming. He talked about symptoms, PANDAS, OCD, intrusive thoughts, all the stuff that ds usually won't describe to me. Afterward, when we left, ds said "it was so great to have someone finally understand what I am feeling" !! So right away I knew we were in the right place, because no other doctor has made him feel that way.

 

Thursday morning: easy boring six hours of IVIG. Amazingly, there were three other boys there that day, and the nurses told us that Dr. K has four PANDAS kids per week scheduled for the next five months!!!!! That is how pervasive this is. Most of them are probably on this forum, and many are from around the world. It was incredibly helpful and enlightening for my ds to meet and see other kids dealing with pandas, and some with more serious symptoms than him. Chatting with the other mothers with quite therapeutic for me as well. Thursday afternoon, no problems, tired but felt great. We actually went in to Chicago and saw the city for a couple hours. Nice mom and son time.

 

Friday morning, again easy boring five or so hours of transfusion. Ds felt great afterward, we just hung out in the hotel afterward. He had been given benadryl and tylenol. We had hydrated like crazy. Dr. K provides two steroid doses just in case of side effects.

 

Friday: 2:30 in the morning, the vomiting started, and went on until 7:30 am. Called Dr. K at 4:30 and 7:30, he said to give ds the first steroid dose, but it had to be at least one hour since the last vomiting and to keep it down for an hour and a half to get absorbed! Poor kid laid there in the dark miserable and nauseous to make that timeframe. Then promptly threw up again. He had nausea and migraine all day until that evening, when Dr. K let me give him second steroid dose and a benadryl to knock him out. He slept through the night and in the morning we had to go to the airport but he felt fine! Ate pizza and steak that day, and went to a graduation party that evening for a friend. I couldn't believe it because he looked and felt like death the day before.

 

I don't know why he had such a severe reaction. I've speculated about his age and size, herxing of mycoplasma (??), etc but in the end there doesn't seem to be anything obvious that makes one child do well and another have severe side effects. The good news is it doesn't last, so if you are worried about that, know that it passes with no lasting problems. He's now on 875 Augmentin for 30 day 2x/day, then 500 once a day for a year.

 

We are now in a wait and see mode to see how he feels. With this age, Dr. K says he measures success at three months. This week ds seems a little worse, tired, unfocused, down. But that is normal I'm told. Tics not too bad tho. One interesting tidbit- it is only recently that they have been treating older kids with IVIG, and Dr. K says he has seen consistent success, just like with younger kids. He says it is counterintuitive that if you have had PANDAS symptoms for many years you would do as well as newer patients, but that seems to be his experience.

 

We did not wait on insurance approval for IVIG so are now fighting that battle.

[nicklemama]

We missed you by a week! DS7 had IVIG two weeks ago on Thurs and Fri. We drove back home on Fri afternoon. Two other kids, a boy 11 and a girl 8 were also getting IVIG. We love Dr K. He IS a character. My DS also got sick, as did the other two kids. DS wasn't sick enough to call Dr K. He had a headache that was helped by Tylenol and he threw up twice on Sat. He spent the day watching tv and lying around. Headache on Sun and Mon. Woke up Tues morning and announced no headache. We are seeing small signs of improvement and a few baby steps back. Overall, he's doing well.

[HT's Mom]

Wow, Nickelmama, isn't it amazing how many of us there are?

 

Some may wonder, wow, is this all Dr. K does and does he always recommend IVIG? I can't speculate on that exactly, but the other moms and I got a chance to sit with him at Starbucks, next door to the surgical center, believe it or not. He chatted quite a bit about PANDAS, the politics and egos surrounding the research and the refusal by certain doctors, psychs, and hospitals to accept it; his belief that virtually all OCD can be traced to infection, not the trauma your grandma caused you by looking at you sideways when you were five. That was sort of how he put it - in other words, most psychological issues he believes will turn out to be physiological responses to some infection or other physical trigger. I'm probably not quoting him well. IN any case, as far as IVIG, he certainly treats with abx also, but seems to believe that many patients will continue to present with symptoms without it.

 

His website at webpediatrics.com can tell you more if anyone is interested and hasn't already looked there.

 

I also wanted to say before that Dr. K told me and ds later that his approach to interviewing the kids (jokes, ignoring mom, etc.) is his secret way of observing the patients. He noticed things like my son's posture, his fraction of a second delay in responding to questions and in responding with the appropriate facial expression, his eyes looking around the room. Described it as evidence of how hard ds is working to look like everything is normal even when it's not in his head. He said all this to my son while he was having the transfusion, joking "now you know my secrets." But afterward, ds said "yes, I do exactly all those things."

[patric]

Just an update for those interested or thinking about IVIG that haven't done it yet:

 

Background - DS16 dealing with tics, lost focus, and intrusive thoughts since about january. He had debilitating PANDAS /OCD five years ago that cleared for the most part with abx alone. No positive strep test this time, but lots of exposure. Positive mycoplasma, treated with zith.

 

I flew to Chicago with him last week for IVIG with Dr. K. We had had phone and email consultations previously, and my son wanted the earliest possible date once we told him about the treatment back in early April. We met with Dr. K on Wednesday afternoon, and he is as nice and great with the kids as all have said. He is really quite a character. He hardly spoke to me but spent the hour talking to my son in a funny/serious way that was very disarming. He talked about symptoms, PANDAS, OCD, intrusive thoughts, all the stuff that ds usually won't describe to me. Afterward, when we left, ds said "it was so great to have someone finally understand what I am feeling" !! So right away I knew we were in the right place, because no other doctor has made him feel that way.

 

Thursday morning: easy boring six hours of IVIG. Amazingly, there were three other boys there that day, and the nurses told us that Dr. K has four PANDAS kids per week scheduled for the next five months!!!!! That is how pervasive this is. Most of them are probably on this forum, and many are from around the world. It was incredibly helpful and enlightening for my ds to meet and see other kids dealing with pandas, and some with more serious symptoms than him. Chatting with the other mothers with quite therapeutic for me as well. Thursday afternoon, no problems, tired but felt great. We actually went in to Chicago and saw the city for a couple hours. Nice mom and son time.

 

Friday morning, again easy boring five or so hours of transfusion. Ds felt great afterward, we just hung out in the hotel afterward. He had been given benadryl and tylenol. We had hydrated like crazy. Dr. K provides two steroid doses just in case of side effects.

 

Friday: 2:30 in the morning, the vomiting started, and went on until 7:30 am. Called Dr. K at 4:30 and 7:30, he said to give ds the first steroid dose, but it had to be at least one hour since the last vomiting and to keep it down for an hour and a half to get absorbed! Poor kid laid there in the dark miserable and nauseous to make that timeframe. Then promptly threw up again. He had nausea and migraine all day until that evening, when Dr. K let me give him second steroid dose and a benadryl to knock him out. He slept through the night and in the morning we had to go to the airport but he felt fine! Ate pizza and steak that day, and went to a graduation party that evening for a friend. I couldn't believe it because he looked and felt like death the day before.

 

Thank you! We are scheduled for June 8th and 9th with Dr. K. so this was very helpful to know what to expect! We are paying outright as well and then trying to get insurance to pay afterward.

Sharon

 

I don't know why he had such a severe reaction. I've speculated about his age and size, herxing of mycoplasma (??), etc but in the end there doesn't seem to be anything obvious that makes one child do well and another have severe side effects. The good news is it doesn't last, so if you are worried about that, know that it passes with no lasting problems. He's now on 875 Augmentin for 30 day 2x/day, then 500 once a day for a year.

 

We are now in a wait and see mode to see how he feels. With this age, Dr. K says he measures success at three months. This week ds seems a little worse, tired, unfocused, down. But that is normal I'm told. Tics not too bad tho. One interesting tidbit- it is only recently that they have been treating older kids with IVIG, and Dr. K says he has seen consistent success, just like with younger kids. He says it is counterintuitive that if you have had PANDAS symptoms for many years you would do as well as newer patients, but that seems to be his experience.

 

We did not wait on insurance approval for IVIG so are now fighting that battle.

[nicklemama]

I loved all the time spent w/ Dr K. Everyone asked him tons of questions. He sat around w/ us in the little infusion area of the surgical center. None of us were coffee drinkers so no one went to Starbucks w/ Dr K. He has a way of winding my DS up. He kept tellling me to relax he'd seen it all. It was hard for me because my DS can get totally out of hand and we work hard to keep it sort of reigned in. I know Dr K just wanted to see his behaviors but I'd seen enough of them over the last yr and a half to fear them, LOL.

[kimballot]

I am glad that you were able to do IVIG with your son. Keep him drinking plenty of water over the next week or two. We also found that ibuprofen and benadryl helped for a few days after - you can see if that is OK with the doctor.

 

I hope you have a smooth recovery from IVIG and a peaceful transition out of the current exacerbation!