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Improvement, but not remission


JAG10

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I'm going to try re-structuring and adding to my question so hopefully some people will share their opinions.

 

1) If you have improvement, but not remission on 4+ weeks of full strength abx...

 

-Do you think the infection you were targeting is gone, but the auto-immune process remains in motion

 

or

 

-Do you think you've slowed down the infection, lightened the bacterial load, but haven't totally eliminated the infection

 

or

 

-Do you think you've eliminated one infection but others remain

 

 

2) If you have improvement, but not remission with one IVIG....

 

-Does that response help you further determine whether remaining symptoms point you toward underlying infection or auto-immune dysfunction that requires more IVIG

 

and/or

 

-Does elevating the child's IgG suppress the auto-immune dysfunction AND help the body eliminate any remaining infections?

 

 

Last question:

 

Are the dilated pupils definitely from brain inflammation? I'm not saying, no dilated pupils, no PANDAS....but what would other causes of consistently dilated pupils (that stayed contracted after IVIG, but dilated again several weeks later) be if not from brain inflammation (excluding drugs)?

 

I realize we may not be certain of the answers, but please share your educated thoughts and insights :)

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I have not done IVIG so I can only give my opinion on the antibiotic question.

 

With my son, I think the time he was on antibiotics, his body did erradicate the infection. But it then took quite awhile for the antibodies to lower, the immune system to calm down, and in his third exacerbation...for residual OCD to be tackled. I think once the infection is gone, it still can take a long time to heal.

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1. I would say it depends on which antibiotic and dose and weight of child. If it is amoxicillin or penicillin, I would say 4 weeks + on those antibiotics and your child could still have a strep infection. Four weeks on a high enough dose of zithromax or possibly something like Omnicef and it may have erradicated the infection, but the antibodies are still in play causing symptoms.

 

Two of my children are on full strength zithromax AND augmentin right now and they are still no where near their baseline. In their cases, I think it is that the antboidies are still causing their symptoms and/or they keep getting exposed to strep at school.

 

I have been told that pupil dilation is indicative of inflammation in the brain. My 4 children have dilated pupilis that come and go, but they are extremely dilated when they are.

 

None of my children have had IVIG yet, so I cannot help there.

Hope this made sense.

 

Colleen

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I'm going to try re-structuring and adding to my question so hopefully some people will share their opinions.

 

1) If you have improvement, but not remission on 4+ weeks of full strength abx...

 

-Do you think the infection you were targeting is gone, but the auto-immune process remains in motion

 

or

 

-Do you think you've slowed down the infection, lightened the bacterial load, but haven't totally eliminated the infection

 

or

 

-Do you think you've eliminated one infection but others remain

 

 

2) If you have improvement, but not remission with one IVIG....

 

A-Does that response help you further determine whether remaining symptoms point you toward underlying infection or auto-immune dysfunction that requires more IVIG

 

and/or

 

B-Does elevating the child's IgG suppress the auto-immune dysfunction AND help the body eliminate any remaining infections?

 

 

Last question:

 

Are the dilated pupils definitely from brain inflammation? I'm not saying, no dilated pupils, no PANDAS....but what would other causes of consistently dilated pupils (that stayed contracted after IVIG, but dilated again several weeks later) be if not from brain inflammation (excluding drugs)?

 

I realize we may not be certain of the answers, but please share your educated thoughts and insights :)

 

 

1..i think both are possible probalbe

2...have not done ivig..but part A..both again...and also time3-6 months...to get real idea of how it's going....

of course i am one to talk...if i don't see something in 24 hours...i'm like..what the.....

but as i go forward..i realize i may have to look at it week by week and month to month...i am not good at this at all....i need to take my own advise

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Hi Jag, Hope things are going ok.

 

I find in some ways, the improved, but not 100% state, the hardest to deal with. When you are in crisis- you throw anything and everything at this disorder to get rid of it. When you have improvement- yet are not 100%- it is so much harder to make judgements- you don't want to rock the boat, yet you want your child fully back to themself.

 

So- I will give you my thoughs FWIW. So far, I really feel that this is an auto immune disorder. In other words, an infection triggers it, but then it takes on a life of its own. I really think the antibiotics (in most cases- minus immune def) clear the infection. But, it takes time and medical intervention (sometimes) to stop the autoimmune process.

 

I can illustrate why I think this: my daughter was much improved on antibiotics (it took a GOOD 4 weeks)- yet she still had major issues. She had pex- which does nothing to clear infection- and immediately remitted to 100% and held the improvement - until she got H1N1.

 

So- I guess I am (right now) a big believer in Swedo's science.

 

I can't really comment on IVIG, as we haven't done it, other than to say the process is less clear than pex.

 

Also- I really think time is a big factor in healing- no matter what course you take.

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I also believe the infection clears, but the antibodies remain (which is the glitch) I also strongly believe that a very early strep infection made this glitch, but any infection "can" trigger it (not necessarily will) I feel that the strep antibodies were let loose even without a strep infection. I think it was H1N1 that caused our most recent/severe episode, but she did have increased antibodies. NO SIGNS of strep at all, and she had her tonsils removed years ago. I feel like the glitch is that the immune system gets taxed, pull out all ammunition (even strep antibodies) if it is having trouble fighting something. Then I feel these antibodies go crazy looking for something that is not there, therefore attacking the wrong places. My dd had NO signs of illness for months before the EXTREME symptoms started. Now in retrospect, there was a gradual downhill for about 3 months, then BAM, very severe within a week. IVIG has been VERY helpful for us. I tend to say she is not 100% because she has some lingering mild OCD/Tics, but in other areas her personality has improved SO MUCH that it would succeed what I WOULD HAVE considered baseline. So it is very hard to give a percentage taking that into consideration. I may have to say 110% improvement personality, and 90% for OCD/ Tics.

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That remaining 25-30% is all ADD stuff; focus, attention, task completion, concentration, memory....but it is HUGE for a 5th grade girl who can't get any of her work done in school, is drowning there and suffering socially because this too. We simply cannot keep her afloat; we're all drowning trying to teach her what she is missing all day. Both my girls are in a private school, which for the most part has been very accommodating, truly. If I pull my 5th grader out...do I pull my 2nd grader out too? It's the only school they've ever known.

 

I feel her May IVIG was successful especially with regards to OCD, but my gut is telling me one just isn't enough. Her IVIG was 23 weeks ago. She's had 3 setbacks since then; 12 weeks/strep/Aug, 15 weeks/myco/Biaxin, 18 weeks/strep/Aug. After these setback we would see the OCD show it's ugly face, but each time we increased abx and did one steroid burst 2 weeks ago and she gets back to that same 70-75% mark again; OCD-gone, ADD debilitating. Pupils WIDELY dilated. I know the ADD stuff can be resolved, I saw it immediately after the IVIG, she was hyper, but very clear thinking and concentration.

 

I'm just shooting from the hip with this comment, but I don't think one IVIG is enough. Yes, we're checking out lyme and co-infections, ect. but my mommy gut tells me that auto immune faucet was running non-stop for YEARS. Maybe one IVIG works if you can keep your child quarantined for a year, but my kid has had 3 exposures in 6 weeks....how is her brain ever going to heal that way?

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That remaining 25-30% is all ADD stuff; focus, attention, task completion, concentration, memory....but it is HUGE for a 5th grade girl who can't get any of her work done in school, is drowning there and suffering socially because this too. We simply cannot keep her afloat; we're all drowning trying to teach her what she is missing all day. Both my girls are in a private school, which for the most part has been very accommodating, truly. If I pull my 5th grader out...do I pull my 2nd grader out too? It's the only school they've ever known.

 

I feel her May IVIG was successful especially with regards to OCD, but my gut is telling me one just isn't enough. Her IVIG was 23 weeks ago. She's had 3 setbacks since then; 12 weeks/strep/Aug, 15 weeks/myco/Biaxin, 18 weeks/strep/Aug. After these setback we would see the OCD show it's ugly face, but each time we increased abx and did one steroid burst 2 weeks ago and she gets back to that same 70-75% mark again; OCD-gone, ADD debilitating. Pupils WIDELY dilated. I know the ADD stuff can be resolved, I saw it immediately after the IVIG, she was hyper, but very clear thinking and concentration.

 

I'm just shooting from the hip with this comment, but I don't think one IVIG is enough. Yes, we're checking out lyme and co-infections, ect. but my mommy gut tells me that auto immune faucet was running non-stop for YEARS. Maybe one IVIG works if you can keep your child quarantined for a year, but my kid has had 3 exposures in 6 weeks....how is her brain ever going to heal that way?

 

 

I agree, that is why we have done 4, 4 weeks apart each, at 2gm/kg- and its working! Not even on abx anymore!

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Priscilla-what a pretty name!

 

This seems to be the trend lately for the non-lymies. Seems this has been brewing for awhile; I found this old post by coco in Jan:

 

http://www.latitudes.org/forums/index.php?showtopic=6783&st=0&p=53971entry53971

 

It states Dr. K is in agreement with every 8 weeks, rather than waiting 3-9 months... which is not what I heard. I suppose there are lots of factors at play with that one... if your kid will need treatment every 8 weeks traveling to Chicago may not seem as doable as a one time and then maybe another might be necessary. Don't get me wrong; I think he really believes this, it just doesn't seem to be what is being reported in this community lately.

 

 

That remaining 25-30% is all ADD stuff; focus, attention, task completion, concentration, memory....but it is HUGE for a 5th grade girl who can't get any of her work done in school, is drowning there and suffering socially because this too. We simply cannot keep her afloat; we're all drowning trying to teach her what she is missing all day. Both my girls are in a private school, which for the most part has been very accommodating, truly. If I pull my 5th grader out...do I pull my 2nd grader out too? It's the only school they've ever known.

 

I feel her May IVIG was successful especially with regards to OCD, but my gut is telling me one just isn't enough. Her IVIG was 23 weeks ago. She's had 3 setbacks since then; 12 weeks/strep/Aug, 15 weeks/myco/Biaxin, 18 weeks/strep/Aug. After these setback we would see the OCD show it's ugly face, but each time we increased abx and did one steroid burst 2 weeks ago and she gets back to that same 70-75% mark again; OCD-gone, ADD debilitating. Pupils WIDELY dilated. I know the ADD stuff can be resolved, I saw it immediately after the IVIG, she was hyper, but very clear thinking and concentration.

 

I'm just shooting from the hip with this comment, but I don't think one IVIG is enough. Yes, we're checking out lyme and co-infections, ect. but my mommy gut tells me that auto immune faucet was running non-stop for YEARS. Maybe one IVIG works if you can keep your child quarantined for a year, but my kid has had 3 exposures in 6 weeks....how is her brain ever going to heal that way?

 

 

I agree, that is why we have done 4, 4 weeks apart each, at 2gm/kg- and its working! Not even on abx anymore!

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JAG, B cells keep memory for at least a year. One ivig will not alter b cell memory. Potentially with reexposure to infectious agent, strep, myco etc... The b cells with start producing antibodies again, it may be short lived or start the autoimmune process again.

 

Yup, I suspect you are correct. So does that mean you need to do IVIG every 4-8 weeks for over a year?

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No not necessarily, ivig may stop production or redirect autoantibodies (my doc says redirect is what the science is thinking) but as far as I know will not change b cell memory. So one year of ivig does not necessarily change b cell memory, redirects autoantibodies. How long and at what dose is a good question? I am guessing from what Dr L is seeing where older teens and adults are relapsing (college), no one may be totally ever secure it won't come back. My Neuro told me that he just saw a dentist who after 20 years of tic remission it has come back and is hurting his ability to practice dentistry. (Of course he doesn't believe in pandas). Anyway, what dose, how often and how much depends on the child and the disease course, relapses and other concerns like immune deficiencies and autoimmune blood markers, side effects of ivig, insurance coverage, and experience of doctor. As a mother, I felt it was necessary becuz, my dd did "feel" ivig helped, and as her tics started to go bad again, she requested more ivig to help. We are hearing a lot lately about multiple ivig's on this forum. My doc says it takes 6 months of monthly ivig to see improvement in "autoimmune disease". (Not pandas, all autoimmune disease). And of course after years of clinical trials with autoimmune disease and ivig, they now know that high dose is needed to see clinical positive results for autoimmune disease. How long will my dd be on every 21 days infusions? My doc did her last panda kid 7 years, until the child was symptom free and relapse free and going off to college.

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I think you are on the right track thinking multiple IVIG's are needed. My kids have only had one but the nurse rescheduled us for the 2nd one 8 wks after the 1st one. My mom was with us and asked if there's a chance they won't need a 2nd IVIG. The nurse said that pretty much nowadays it's 2 right off the bat and then after just wait and see. When I spoke to Dr. B, he said to check in at week #4 post IVIG to let them know how things are going with the kids and by week #7 post IVIG if things are not 95% better, IVIG #2 is a must. I asked him if the OCD for DD (not so much better but she has learned to manage it better) is just a habit and needs behavioral therapy to combat it. He said, "No! The auto immune antibodies are causing the OCD and until that is addressed and "fixed" with IVIG, the OCD will not go away." He was very certain and firm on this. He was also reassuring that will win this battle but it just takes time which is comforting to keep up the good fight. From what I understand, he thinks she's past the bacterial/infection level and it's the immune system level we are tackling. Is there strep harboring in her body??? Is it that my DS still has tonsils/adenoids and was our carrier and then too came down with PANDAS or as Dr. B. thinks and I tend to agree, my DS has had a lower level chronic state of PANDAS since he was little--quite possibly and he's the one not allowing DD to get to "remission" level as quickly nor himself??? I don't know. But that's why we're fighting to get his T's & A's removed ASAP. BTW, got appt w/ Dr. X on Monday!!! Yippee! Said I found him from my insurance dr. list. You think he's a good surgeon/good hospital?!?!

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Wow!!! That gave me a major lump in the throat. I don't know what the doc is going to say my dd10 needs, but I have a feeling it is more IVIG.

 

If he can't get it covered by insurance, there are ways to significantly bring down the cost from the $1000 per 10 lbs your child weighs we've heard on this forum before. You can get Gamunex from Costco pharmacy for $46/gram which is much cheaper if you can get a doctor on board to write the script and have it done at home.

 

Nevergiveup-does your dd have her infusion in a single day? Do you have it done at home? I wonder what a home nurse ends up costing per day for infusion?

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At home but can also have in hosp, just cuz my doc is in charge of infusion center at hosp. Home care can cost about 30 to 50 an hour, depends on what you negotiate. Don't let them charge over, this is what they accept from insurance companies. My dd's infusions are approx 1500 per infusion for 25 grams, this is how much my insurance pays, hospital bills out 3000 approx for each infusion. You can get big breaks from Caremarks foundation, submit income and they will cut costs even more for (Caremark is CVS's group that handles blood products). You may be able to get your infusions for 1000 grand per month. Not sure how all this works with Bouboulis office, what type of rates does he charge with no insurance coverage??

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