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1 1/2 wks post ivig - need advice please


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It is 1 1/2 weeks post ivig for us. The first few days after the ivig, my dd's tics were very low, BUT they have been slowly increasing ever since. Things are different in that, tics that were lower are now higher and those that were higher are now lower. The vocal tics are still there too. I know that Dr. K talks about certain weeks/months when the healing crisis is to be expected. Can anyone help me to understand when those are? I am trying to listen to all the great advice that is being given to me but it would help a ton to understand this process better - IF that is even possible.

 

My dd has had tics for almost 6 yrs now, Dr. K (through phone consults agreed it was pandas and strongly suggested ivig), the medical professionals we are with have agreed as well, so we went for it. I am praying we made the right decision. I am scared to death. I would be appreciative of any help. Thanks!

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I'm not the one who can give you comforting advice on post-IVIG recovery. It was not a good experience for us, tho we are in the minority. I can tell you that the adverse reaction did eventually subside (10 weeks for us)and there were no lasting ill effects. It wasn't helpful for us, but the only long term damage was to our wallet.

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It's hard to know what to expect at week number X; there are so many variables amongst our kids. The observation that symptoms are worsening is referred to in many different ways on this forum such as flipping back of pages (like you are going back in time seeing symptoms from the child's past), die-off, herxing, and my fav: parent suicide period! Some of these terms have specific meanings that are used rather liberally here, but the idea is the same....your kiddos symptoms are worsening.

 

What you are describing is more typical than not. My dd didn't really get worse but I think that's because she was one hot mess to begin with at the time of her 1st ivig. We saw more of a shifting of behaviors where for a couple weeks symptom set A was more predominant, then symptom set B would ramp up while the others diminished. At the time, I described it as a pendulum swinging back and forth from one set of symptoms to the other, but with each swing, less energy or intensity of symptoms.

 

I'm sure Dr. K told you...ANY change is good; getting worse or getting better confirms there is an underlying medical condition to the behaviors exhibited rather than "baby, you were born this way." No change can be concerning, but even some of those folks have gone on to find underlying infections or a specific abx that started rolling the ball in the right direction.

 

Dr. K has some children who get worse and start carrying-on during the treatment. And his response is giddy; he sees it as a positive prognostic indicator. So, if you adopt that frame of mind, it might result in a little less wear and tear on your soul.

 

Hang in there & pop-on for support :)

 

Jill

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It's hard to know what to expect at week number X; there are so many variables amongst our kids. The observation that symptoms are worsening is referred to in many different ways on this forum such as flipping back of pages (like you are going back in time seeing symptoms from the child's past), die-off, herxing, and my fav: parent suicide period! Some of these terms have specific meanings that are used rather liberally here, but the idea is the same....your kiddos symptoms are worsening.

 

What you are describing is more typical than not. My dd didn't really get worse but I think that's because she was one hot mess to begin with at the time of her 1st ivig. We saw more of a shifting of behaviors where for a couple weeks symptom set A was more predominant, then symptom set B would ramp up while the others diminished. At the time, I described it as a pendulum swinging back and forth from one set of symptoms to the other, but with each swing, less energy or intensity of symptoms.

 

I'm sure Dr. K told you...ANY change is good; getting worse or getting better confirms there is an underlying medical condition to the behaviors exhibited rather than "baby, you were born this way." No change can be concerning, but even some of those folks have gone on to find underlying infections or a specific abx that started rolling the ball in the right direction.

 

Dr. K has some children who get worse and start carrying-on during the treatment. And his response is giddy; he sees it as a positive prognostic indicator. So, if you adopt that frame of mind, it might result in a little less wear and tear on your soul.

 

Hang in there & pop-on for support :)

 

Jill

 

Appreciate your help. Funny, but on the first day of infusion, my dd started ticcing more during the treatment. I was worried and they noticed too and said they would monitor and if it continued to escalate they would slow it down or stop. Thankfully, it was not bad and we continued on. The second day was uneventful but the days following have been a roller coaster. Did not realize that Dr. K views getting worse or better as a the same.

 

Jill - how is your daughter doing now?

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My dd11 had her 1st ivig with Dr K one year ago just before Memorial Day. She had been sick a very long time, since preschool, but significantly worse March 2007, first grade. By the time we knew what we were dealing with, she had been on a cocktail of 3 psych meds for years and she was barely, barely functional enough to attend school. Whenever, she got mosquito bites, which was 6 months of the year, she would scratch them to sores and then pick at the scabs over and over until they were ulcerated. All that stopped since that first ivig and she's been off all psych meds ever since. But she hovered around that 85% recovered rate with some cognitive fog and anxiety as remaining symptoms plus she still had the dilated pupils.

 

We paid out of pocket for that first ivig and I don't regret it, not one cent. But we want her 100% as does everyone else. We took her to Dr. B who is a 3 hr drive rather than a plane ride from Philly. She tested low IgG and failed all her strep pneumonea titers so Dr. B was able to get her covered for ivig for 6 months ending next week. So we are taking her for her "last" ivig this Wed-Thurs. Her IgG levels are now In the 1500 range more than twice what it was when we started. We had a hiccup last month as her liver enzymes were crazy elevated from too much abx. We did a trial of Batrim on top of Zith for possible Lyme stuff, but she has 3 negative WBs now and we are done with treating possible Lyme and are convinced it is not an issue in her case.

 

Now we wait and see if once we get several weeks out from this last ivig, is the lingering anxiety gone? When I look closely at her academic issues they seem to be anxiety based to me. Anyway, I hope so, but it is a hard symptom to kick for some reason. I can't really complain, she's come so, so far. I also have a younger dd8 who we have been able to manage with abx. I won't be able to tell until the end of the summer with my older girl, likely.

 

Hang in there. There are lots of folks here who have had rocky post ivig periods. Lean on them as they can definitely relate!!!

Jill

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My DS is 7 wks post IVIG w/ Dr K. His tics were never his main presentation. He had PANDAS for 1 yr before he was diagnosed and treated. He developed tics right at the one yr mark of him getting sick w/ PANDAS, just before diagnosis. He had eye blinking tics and a throat clearing tic that also involved him raising his arm to cover his mouth. Those went away two months after we started abx. The eye blinking tic came back about a month before IVIG. A few weeks after IVIG, he developed a should shrugging tic and the eye blinking tic went away. The shoulder shrugging got really noticeable. He's had it for about a month now but in the last week or so, its been slowing down. He doesn't do it nearly as frequently and its much less noticeable.

 

I don't think there is a 'script' of healing. Each child is different. Some things are much better now. The tics got worse and now they are getting better again.

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Our decline began 2 weeks after IVIG and lasted for 8 weeks before we saw relief. My son's case was severe as he had PANDAS symptoms for 14 years. He is doing much better now (16 weeks post IVIG), but is still not at baseline. Physically, though - he has never been healthier, and his PANDAS exacerbations have always been tied to ill health - so we are hoping that IVIG (he is preparing for his 3rd one now due to immune deficiency) will keep him healthy and he will continue to progress.

 

The immunologist told me that one theory is that the post IVIG exacerbation occurs when the new antibodies attach to the bad autoantibodies to make an immune complex. That complex is a glob of antibody stuff that has to be removed from the body. The body cannot remove it all right away, so it deposits in organs and joints (usually kidneys an joints) until it can be removed. In the case of PANDAS, some people speculate that these complexes are being deposited in the brain, since the autoantibodies are located in the brain. Dr. Swedo talked about this a little in this video - though she did not talk about deposits in the brain http://www.autism.com/videoflv-legacy.asp?flv=sd08-46-nimh_swedo.flv&h=240&w=720&VID=84

 

Once I started to understand that I did push water and start giving charcoal and vitamin B in an effort to move those globs along and out of his system. I don't know if it really did anything, but my son seemed to do better around the time I did that, but we also changed his medications then so that may have been the thing.... or it may just have been time for him to improve.

 

I am sorry you are going through this. I hope it does not last long for you. I have not heard anyone say that their child got worse and stayed worse with IVIG (I was just reassuring DH of that yesterday)... though some report many months before things get back to baseline or better.

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