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One week after second IVIG


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My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth.

 

So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas???

 

 

Dedee

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I'm so sorry you're in this place. You do have several variables right now, so it may take a few more weeks to see what's what. Try to remember how much you've accomplished - you're getting abx in her - that's HUGE! The other supplements are a big step forward too, way bigger than just baby steps. You should be proud!

No magic bullet comes to mind. You could ask Dr M to sign a medical form allowing your DD to take motrin during the school day to keep it from wearing off, reducing the roller coaster effects. Or see if you can get a liquid version of aleve, which lasts longer.

 

I would encourage you to still do ERP every day, even if there are days she seems too unable to fight it. Reinforcing the concepts and skills helps, even when they don't produce immediate results. It's a mindset and the more you do it, the more it becomes natural. Maybe a skype check in with the wise people in Florida.

 

Try to keep track of patterns. If you can journal, or give each day a numeric score, something to see whether things are getting better or worse. I used to email my BFF every day and save my sent messages. Then before a doctor's appt, I'd review them and it would be like reading a journal, and remind me of things I'd forgotten. I got friendship therapy and was able to keep a journal in the same step.

 

Keeping you in my thoughts.

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My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth.

 

So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas???

 

 

Dedee

 

Dee Dee - I am so very sorry to hear this. Looking over your post - I would think a few blips of behavior after CBT is to be expected - kids have short returns of behaviors after behavioral approaches, but it sounds like you go through those just fine.

 

Do you have any idea if she is being exposed to something (germ-wise) in school? Have you been in touch with the school nurse to see if there is any strep, mycoplasma, or other infections going around? Even with IVIG she could be reacting. Just throwing this out there in hopes that you find the underlying cause of this regression.

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Those first weeks after IVIG were SO rough for us. There were times when I wondered what we had done.

 

To get through it (and it has been SO worth it!!) we used a lot of Benadryl (around the clock, every six hours). We used charcoal but that didn't seem to help as much as the Benadryl. We did Motrin in the beginning but didn't keep up with that.

 

We kept life very simple and didn't expect much, which is so hard because everyone is hoping that IVIG will have a wonderful effect.

 

As hard as it is, really three months out is the indicator of success for most. We actually are closing in on five months out, and still have some regressions every couple weeks, but when we give the benadryl, it gets him through and he comes out even better.

 

We do keep up on the abx too, to prevent further infections.

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Thank you all so much for your encouragement and advice. You all have such good ideas. Sometimes it is so hard to think in the midst of chaos and confusion. My husband has been no help. He gets frustrated so easy and I think expected to see results sooner. The regression is hard to handle, even when you know in your mind to expect it and that it is temporary. Plus with school starting, I keep thinking of last year and how this all started in November and how our lives have completely changed. School was an absolute nightmare for us after that. I'm just not sure I can do that again. I'm just looking for a light at the end of all this. Thanks for all your support.

 

Dedee

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Thank you all so much for your encouragement and advice. You all have such good ideas. Sometimes it is so hard to think in the midst of chaos and confusion. My husband has been no help. He gets frustrated so easy and I think expected to see results sooner. The regression is hard to handle, even when you know in your mind to expect it and that it is temporary. Plus with school starting, I keep thinking of last year and how this all started in November and how our lives have completely changed. School was an absolute nightmare for us after that. I'm just not sure I can do that again. I'm just looking for a light at the end of all this. Thanks for all your support.

 

Dedee

 

DeDee - I just want to make sure you have taken your son's mycoplasma into consideration. I believe you posted about it in another thread. I know my son really reacted when my daughter and I had mycoplasma. I know you cannot test your dd right now as she just had IVIG, but the PANDAS doc should be able to help you with treatment.

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My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth.

 

So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas???

 

 

Dedee

 

I'm in the same boat and pretty discouraged so I'm sorry if this comes across negatively, I don't mean it that way. I have at least $1,000 worth of useless supplements that help for a short time then end. I've printed out enough research pages to fill a large bedroom. I've called every doctor in state and wish those who were useless would have told me so without having us wait a month, take the day off work and travel there to find they are dumber than tacks and twice as stubborn.

 

My son was better after the first IVIG but worse after the second too. We seemed to finally find a few things that improved him this Summer only to find him worsening before school as well. I am sick thinking about it. Dr. T had said sometimes the donated antibodies in IVIG could be from a person with some PANDAS antibodies since it's so unrecognized, so it's a crap shoot. Many improve but sometimes you get a dud dose. Having said that he did have a "turning back the pages" and got worse before he got better after the first IVIG. It seemed like the last bad symptom came, became worse, then left, going backwards through his symptoms. It very well could be that for your daughter.

 

I would think your choices might be another IVIG if she doesn't seem better soon, and hopefully it will be a good batch, or PEX to pull out the bad antibodies. We too still have elevated mycoplasma. And both Azith and Biaxin make him worse. So frustrating. We are hoping for PEX soon, praying it is finally the answer.

 

Nancy

Edited by fcefxer
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Funny---I have always wondered if the reason some kids to better is because they are not getting "pandas autoantibodies" from donors. Interesting.

 

My daughter had her first IVIG the end of June. Following that we saw great improvement. During July we went to a three week intensive OCD program where we continued to see improvement. We started to see a day here and there of pre OCD behavior toward the end of July but nothing major. She was scheduled for her second IVIG in August. Dr. M. always suggests two IVIG's and then a "wait and see approach". She started school back the first week of August and we saw major regression that week, but of course didn't know if it was the stress of school or what. Since then the regression has gradually gotten worse. Her second IVIG was one week ago. I would say that we are absolutely back to pre-IVIG behavior at this point. I could barely get her dressed and to school this morning. I cried as I drove away from the school. Just the thought of another school year like last year almost does me in. I am giving her charcoal but she won't take much medicine (and no liquids)so I have to pick and choose the most important things to get in. She takes antibiotics, fish oil, and maybe motrin or benadryl at night, depending on how many I can get down. In the morning I alternate, one morning I give charcoal, the next I give probiotics, milk thistle, and a motrin if I can get it in. It really is a miracle just getting her to take medicine. It was about four months ago that she would throw up any sort of medication. So it is really baby steps with supplements and so forth.

 

So, I guess what I am looking for here is some encouragement that this is going to improve??? We had some really great weeks in July that gave me such hope. I want to see that little girl again. Does anyone have any ideas???

 

 

Dedee

 

I'm in the same boat and pretty discouraged so I'm sorry if this comes across negatively, I don't mean it that way. I have at least $1,000 worth of useless supplements that help for a short time then end. I've printed out enough research pages to fill a large bedroom. I've called every doctor in state and wish those who were useless would have told me so without having us wait a month, take the day off work and travel there to find they are dumber than tacks and twice as stubborn.

 

My son was better after the first IVIG but worse after the second too. We seemed to finally find a few things that improved him this Summer only to find him worsening before school as well. I am sick thinking about it. Dr. T had said sometimes the donated antibodies in IVIG could be from a person with some PANDAS antibodies since it's so unrecognized, so it's a crap shoot. Many improve but sometimes you get a dud dose. Having said that he did have a "turning back the pages" and got worse before he got better after the first IVIG. It seemed like the last bad symptom came, became worse, then left, going backwards through his symptoms. It very well could be that for your daughter.

 

I would think your choices might be another IVIG if she doesn't seem better soon, and hopefully it will be a good batch, or PEX to pull out the bad antibodies. We too still have elevated mycoplasma. And both Azith and Biaxin make him worse. So frustrating. We are hoping for PEX soon, praying it is finally the answer.

 

Nancy

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