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Post IVIG: rough times


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My 11 y.o. son had two day IVIG in early Jan. We've seen an 80% reduction in separation anxiety and "delusional" anxiety attacks (convinced he had killed someone, that he was going deaf and blind, etc.) Dr. K told us about the "turning back the pages" phenomenon where he would relive some things that he had gone through in the past.

 

Is it normal for the child to develop completely new phobias after IVIG? For ex, anxiety attack bc he thought he had swallowed a hair from our pet bunny, and that this would make his heart stop beating. He is not reliving an old issue, this is totally new. Is that normal? Also, he had terrible focus and attention issues prior to the IVIG, but what little he had is totally gone now.

 

My son may be different from other children in that he has a PDD-NOS diagnosis (autism spectrum) and his DNASE was 1920 for three years prior to IVIG. (FWIW: Dr. K is wondering if he had an early onset of PANDAS that was misdiagnosed as PDD...) Diana told me that months 2 and 3 after IVIG can be a nightmare, just wondering if anybody has had experiences similar to mine. Did anybody else lose attention and focus for a while and get it back? Develop completely new anxieties?

 

Thanks for any reassurance and/or info you can provide!

Mary

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Hi, Mary:

 

Our son is older also (12) and had IVIG with Dr. K in early October. We saw significant improvement in the first 3 weeks and lots of scary symptoms improved dramatically or totally disappeared. However, we also experienced brand-new symptoms we had never seen before. Our son developed a new vocal tic (a severe, screeching one) about 6 weeks post-IVIG. It literally appeared from nowhere one morning and had grown severe by that evening. It hasn't gone away since.

 

So - unfortunately - it does seem like residual autoimmune response even after IVIG can still cause new damage, and new symptoms, for awhile.

 

We're trying a 2nd round of IVIG next week. We'll post our progress on the forum to let others know the results.

 

Good luck with your son!

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My 11 y.o. son had two day IVIG in early Jan. We've seen an 80% reduction in separation anxiety and "delusional" anxiety attacks (convinced he had killed someone, that he was going deaf and blind, etc.) Dr. K told us about the "turning back the pages" phenomenon where he would relive some things that he had gone through in the past.

 

Is it normal for the child to develop completely new phobias after IVIG? For ex, anxiety attack bc he thought he had swallowed a hair from our pet bunny, and that this would make his heart stop beating. He is not reliving an old issue, this is totally new. Is that normal? Also, he had terrible focus and attention issues prior to the IVIG, but what little he had is totally gone now.

 

My son may be different from other children in that he has a PDD-NOS diagnosis (autism spectrum) and his DNASE was 1920 for three years prior to IVIG. (FWIW: Dr. K is wondering if he had an early onset of PANDAS that was misdiagnosed as PDD...) Diana told me that months 2 and 3 after IVIG can be a nightmare, just wondering if anybody has had experiences similar to mine. Did anybody else lose attention and focus for a while and get it back? Develop completely new anxieties?

 

Thanks for any reassurance and/or info you can provide!

Mary

 

We had IVIG in Oct. and had 80% reduction of symptoms. right away. gradually she started having issues again and things escalated quite a bit within the last month or two - most old behaviors are gone (including tics), however she started a new behavior in December where she started asking questions over and over again (usually the same one), and she started yelling out about white spots or dots or lights in her visual field and would hit at them. Thank goodness all of that has almost gone away. She does occasionally during the day ask silly or inappropriate questions, but not to the extent of last month where it was many times in a minute. Focus and attention is definitely not what it was prior to the onset of all symptoms last year. She needs an aid with her in school and academically she is about 1 1/2 to 2 years behind. You still can't have a totally normal conversation with her or read a book to her because she will interrupt constantly by talking about something or asking something that's irrelevant. I think that the changes in behavior have to do with what part of the brain is affected at any point in time - issues involving receptor sites and neurotransmitters, etc. Pat

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My 11 y.o. son had two day IVIG in early Jan. We've seen an 80% reduction in separation anxiety and "delusional" anxiety attacks (convinced he had killed someone, that he was going deaf and blind, etc.) Dr. K told us about the "turning back the pages" phenomenon where he would relive some things that he had gone through in the past.

 

Is it normal for the child to develop completely new phobias after IVIG? For ex, anxiety attack bc he thought he had swallowed a hair from our pet bunny, and that this would make his heart stop beating. He is not reliving an old issue, this is totally new. Is that normal? Also, he had terrible focus and attention issues prior to the IVIG, but what little he had is totally gone now.

 

My son may be different from other children in that he has a PDD-NOS diagnosis (autism spectrum) and his DNASE was 1920 for three years prior to IVIG. (FWIW: Dr. K is wondering if he had an early onset of PANDAS that was misdiagnosed as PDD...) Diana told me that months 2 and 3 after IVIG can be a nightmare, just wondering if anybody has had experiences similar to mine. Did anybody else lose attention and focus for a while and get it back? Develop completely new anxieties?

 

Thanks for any reassurance and/or info you can provide!

Mary

 

We had IVIG in Oct. and had 80% reduction of symptoms. right away. gradually she started having issues again and things escalated quite a bit within the last month or two - most old behaviors are gone (including tics), however she started a new behavior in December where she started asking questions over and over again (usually the same one), and she started yelling out about white spots or dots or lights in her visual field and would hit at them. Thank goodness all of that has almost gone away. She does occasionally during the day ask silly or inappropriate questions, but not to the extent of last month where it was many times in a minute. Focus and attention is definitely not what it was prior to the onset of all symptoms last year. She needs an aid with her in school and academically she is about 1 1/2 to 2 years behind. You still can't have a totally normal conversation with her or read a book to her because she will interrupt constantly by talking about something or asking something that's irrelevant. I think that the changes in behavior have to do with what part of the brain is affected at any point in time - issues involving receptor sites and neurotransmitters, etc. Pat

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Thanks so much for all your help! Looks like the development of new symptoms post-IVIG isn't unusual. Please let me know what happens after your second IVIG, worried dad! We might be doing it again, as well. And I'd also like to hear about your daughter's progress, Pat. Did your kids have the skyhigh DNASE levels? I'm wondering if the larger DNASE titer means a longer recovery time, or indicates the need for more infusions. Are there any such correlations?

Mary

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Hi, Mary:

 

I'm not aware of any correlation between titer levels and recovery time; titer levels vary so widely between children that I think only the trends (change from a particular child's "baseline") are useful to the docs generally.

 

Dr. K told us that what he's seen correlate with longer recovery times post-IVIG are: patient age (10 or older heal more slowly), symptom severity, and time between original illness and start of effective treatment (e.g., IVIG / PEX or at least antibiotics).

 

 

Thanks so much for all your help! Looks like the development of new symptoms post-IVIG isn't unusual. Please let me know what happens after your second IVIG, worried dad! We might be doing it again, as well. And I'd also like to hear about your daughter's progress, Pat. Did your kids have the skyhigh DNASE levels? I'm wondering if the larger DNASE titer means a longer recovery time, or indicates the need for more infusions. Are there any such correlations?

Mary

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