Repetitive IVIG

[Debbie1]

It has been a long time since I posted and I am hesitant to post an update, but here its is:

 

DD13 is 3.5 months post IVIG #2 and doing very well. She has some very mild tics remaining and we are waiting and watching her progress, but so far we are very happy with what we see.

 

DS9 has had a harder time. He had both tics and OCD pre-IVIG and responded well to two rounds of HD IVIG. After round two, I would say his symptoms were 85-90% improved. 1 month after IVIG #2, he came down with a sinus infection that took over a month to clear. Three weeks into the infection, several behaviors returned and did not go away when the infection was cleared. We decided to pursue IVIG #3 to get him back to where he was. Blood tests results received right before IVIG showed he had a mycoplasma infection and his strep titers were high again as well. He was switched from augmentin to zithromax to address the mycoplasma. We are now 3.5 weeks post IVIG #3 and he is not doing well. Still lots of OCD, some more intense than before and he developed a neck tic post IVIG as well. We just switched him back to augmentin today after 5 weeks on zithromax. He seems to have done better over time on the augmentin and we have zithromax resistant strains of strep in our area.

 

I recently met with one of our doctors to discuss the safety of repetitive use of HD IVIG. He said that repetitive IVIG increases the risk of allergic reaction. In addition, your body can start to produce anti-IgA antibodies which can then make IVIG less or not effective. He recommended measuring IgA and anti-IgA antibodies before considering any more IVIG. According to the doctor, falling IgA and high antibodies would suggest that you should not pursue further IVIG. Has anyone measured these? What were the results? Has anyone found that with repetitive IVIG you get diminishing returns? What options are left if IVIG doesn't work anymore? I am not trying to be alarmist, but felt it was important to post the questions.

 

Any guidance is appreciated.

[Fixit]

I recently met with one of our doctors to discuss the safety of repetitive use of HD IVIG. He said that repetitive IVIG increases the risk of allergic reaction. In addition, your body can start to produce anti-IgA antibodies which can then make IVIG less or not effective. He recommended measuring IgA and anti-IgA antibodies before considering any more IVIG. According to the doctor, falling IgA and high antibodies would suggest that you should not pursue further IVIG. Has anyone measured these? What were the results? Has anyone found that with repetitive IVIG you get diminishing returns? What options are left if IVIG doesn't work anymore? I am not trying to be alarmist, but felt it was important to post the questions.

 

Any guidance is appreciated.

 

this is concerning, as i wonder that too.....

i was just speaking with a mom today, in regard to something similar....

i was wondering if per Nevergiveup.(.if that was the right person.)..who is getting monthly low ivig to their child...

if that might have some merit...

if i got this part right also....they started really low dose and are increasing it every month...almost like allergy shots......5g .7g then 1full g..

i just started my ds on allergy shots, with much hesitation, but he is more allergic than most here i think....so much so...i believe your standard procedure has 4 stages and doc b started ds even lower to have 5th stage...i believe an 2 months on the front end at super low dose building up....

 

i would love to know if i got the theory righit or the protocal right that nevergiveup is using...and if that is wrong person,please forgive me....

 

i wonder if you should now look into low dose and build up to counter act allergic reaction, if that is what happened?

 

and if iga is falling but anti-bodies are high...with they fall naturally and you just need more time than usual to get that healing effect....like if you got myco p...never fully cleared it...got it again never fully cleared it...and by the end you end up having mp for4-6 months and cannot expect to feel right in 1 month after 2 weeks of abx....it would probalby take months to feel/be right....just another thought

[JAG10]

This is way out of my league, but I think the exact measurements are important and not just whether they are falling or not. One of the docs won't administer IVIG to children with IgA lower than 20, others will, but change brands.

 

There are parents who have reported more frequent administration with their goal being to build up to medium-sized doses of IVIG and maintain IgG levels in the upper end of the normal range for immune deficiency. Is that what you meant, Fixit?

[KeithandElizabeth]

I do not know the answer to your question, but our experience with IVIG was very similar to yours. Our son showed drastic improvement with his first HD IVIG. Then we began monthly LD IVIG and he eventually regressed and had elevated mycoplasma and strep levels. We ended with another HD IVIG last February and then discovered lyme disease and stopped doing IVIG's. Treating the infections with multiple antibiotics and herbs and using the detox principles has dramatically helped both of my children.

 

I have noticed that several other children had much more dramatic results from IVIG with the first HD IVIG compared to the second or third HD IVIG and I have always been very curious about his. Hearing your doctor's explanation is interesting.

 

I am sorry that you are seeing this regression. I know how frightening it is as a parent. Has any of your doctors discussed combining azithromycin and omnicef for the mycoplasma?

 

Elizabeth

[Fixit]

This is way out of my league, but I think the exact measurements are important and not just whether they are falling or not. One of the docs won't administer IVIG to children with IgA lower than 20, others will, but change brands.

 

There are parents who have reported more frequent administration with their goal being to build up to medium-sized doses of IVIG and maintain IgG levels in the upper end of the normal range for immune deficiency. Is that what you meant, Fixit?

 

Yes.

but i was also wondering...per today's talk and now new topic...if it is something similar to allergy shots....building a tollerance. and not create an allergic response like anaphylatic shock....vs....if the doctors intent is to build slowly... put the foundation down, let the mortor cure and add on...

can you tell the difference it what i'm asking...it's the best i can do....

 

also i think NGU does check the ig levels regularly...i think

 

and i remember that there was info about using a different brand if iga were low and you should have those checked prior to ivig....

 

so i wonder..and this is just a discussion here....if Debbie should check what brand of ivig her children received...and if it would be safe if she changed to the other brand..

[Fixit]

I do not know the answer to your question, but our experience with IVIG was very similar to yours. Our son showed drastic improvement with his first HD IVIG. Then we began monthly LD IVIG and he eventually regressed and had elevated mycoplasma and strep levels. We ended with another HD IVIG last February and then discovered lyme disease and stopped doing IVIG's. Treating the infections with multiple antibiotics and herbs and using the detox principles has dramatically helped both of my children.

 

I have noticed that several other children had much more dramatic results from IVIG with the first HD IVIG compared to the second or third HD IVIG and I have always been very curious about his. Hearing your doctor's explanation is interesting.I am sorry that you are seeing this regression. I know how frightening it is as a parent. Has any of your doctors discussed combining azithromycin and omnicef for the mycoplasma?

 

Elizabeth

 

i realize that your children have lymes

 

but i have wondered too...and they don't have lymes that is known of

but there are others who have had several with great response each time?????

are those the ones who did it 8 weeks apart with no hesitation...vs waiting 3,6,9 months....

[formedbrds]

[

Edited January 16, 2011 by formedbrds

[peglem]

My daughter's IgA was 11 before she ever did IVIG. That's pretty far below normal range. I don't think anti IgA titers were ever checked. She also has IgG deficiency. She had 2 LD IVIGs, 3 weeks apart, and then has had 7 HDIVIGs 4 weeks apart. She gets Gammugard, which the IVIG nurse tells me is low IgA. She has never had a negative reaction to the HDIVIG, even though she does the whole infusion in 1 day.

[Fixit]

i have another question.....

aren't there conditions that receive monthly or regular ivig...some ms cases...and some others...

 

are those hd or ld?

is there the same concern of allergic reaction for that...

 

sorry if this is all repetitive....but have a hard time retaining most of all the info i keep reading and reading

[Fixit]

It has been a long time since I posted and I am hesitant to post an update, but here its is:

 

DD13 is 3.5 months post IVIG #2 and doing very well. She has some very mild tics remaining and we are waiting and watching her progress, but so far we are very happy with what we see.

 

DS9 has had a harder time. He had both tics and OCD pre-IVIG and responded well to two rounds of HD IVIG. After round two, I would say his symptoms were 85-90% improved. 1 month after IVIG #2, he came down with a sinus infection that took over a month to clear. Three weeks into the infection, several behaviors returned and did not go away when the infection was cleared. We decided to pursue IVIG #3 to get him back to where he was. Blood tests results received right before IVIG showed he had a mycoplasma infection and his strep titers were high again as well. He was switched from augmentin to zithromax to address the mycoplasma. We are now 3.5 weeks post IVIG #3 and he is not doing well. Still lots of OCD, some more intense than before and he developed a neck tic post IVIG as well. We just switched him back to augmentin today after 5 weeks on zithromax. He seems to have done better over time on the augmentin and we have zithromax resistant strains of strep in our area.

 

I recently met with one of our doctors to discuss the safety of repetitive use of HD IVIG. He said that repetitive IVIG increases the risk of allergic reaction. In addition, your body can start to produce anti-IgA antibodies which can then make IVIG less or not effective. He recommended measuring IgA and anti-IgA antibodies before considering any more IVIG. According to the doctor, falling IgA and high antibodies would suggest that you should not pursue further IVIG. Has anyone measured these? What were the results? Has anyone found that with repetitive IVIG you get diminishing returns? What options are left if IVIG doesn't work anymore? I am not trying to be alarmist, but felt it was important to post the questions.

 

Any guidance is appreciated.

 

Debbie..not sure if you caught the part i where i was trying to suggest maybe you need more time this round...as your dd and ds have different systems....

i know when i speak...it is probably confusing.....i have to make pictures in my mind so i understand..that's why all the analogies

[nevergiveup]

Wow a lot to learn and investigate. My dd has ivig every 21 days and her iga is increasing not decreasing and she is receiving gammaguard SD, lower iga ammounts. But if your childs iga is decreasing after ivig, this sure would make you think they are producing anti iga antibodies. But can we assume if iga is increasing, no anti iga antibodies are being produced?

[Debbie1]

Thank you for the responses. My son is not immune deficient and I am wondering whether those with immune deficiencies respond differently to IVIG than those without. My son's IgA was normal pre-IVIG #1. We have not yet retested nor have we tested his anti-IgA yet but we probably will in the next several weeks.

 

Elizabeth - I had not heard of combining omnicef and azith to treat mycoplasma, but I will bring it up with the doctor. My son was on augmentin when he contracted the mycoplasma infection. We switched him to azith at that point which he stayed on for 5 weeks. We switched him back to augmentin yesterday. I hope that was sufficient to treat the myco p. It was a relatively new infection. He was tested for it a several months ago and was negative. We think he picked it up in August.

 

Fixit - You may be right that he just needs more time this time around...I certainly hope so. With previous rounds, we already saw improvment at this point and that is what is concerning me.

 

Nevergiveup - Is your dd immune deficient?

[nevergiveup]

Yes immune deficient. But her iga was around 60 before she ever had an infusion. Now it is 80, ivig does not increase iga or igm like it does igg. I have been told that ivig will not help an iga deficiency. My dd has an igg deficiency. But ivig decreasing iga is something I have never heard of before and lower iga's are associated with neuro psych symptoms so....But anti iga antibodies, reminds me a little of the drugs I took for ms, (interferon) some people start producing antibodies against the drug, basically eliminating its effectiveness.

[peglem]

Yes immune deficient. But her iga was around 60 before she ever had an infusion. Now it is 80, ivig does not increase iga or igm like it does igg. I have been told that ivig will not help an iga deficiency. My dd has an igg deficiency. But ivig decreasing iga is something I have never heard of before and lower iga's are associated with neuro psych symptoms so....But anti iga antibodies, reminds me a little of the drugs I took for ms, (interferon) some people start producing antibodies against the drug, basically eliminating its effectiveness.

Can you tell me more about the bolded? I thought I had checked out IgA deficiency pretty well, but this I did not know.

[nevergiveup]

Peglem, I will get you some of the data I have. Need to dig it up.