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IVIG and Lab questions


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I have been wondering alot of the same things. We have been dealing with the PANDAS symptoms for 2 years.. but didn't know it was PANDAS until 10 months ago.. at which time they started her on antibiotic and she has been on them ever since.. with in a month of starting the antibiotic she was 99% better.. only having mild symptoms when exposed to someone sick. Then she got an infection in Oct 2010 in the form of an abscessed tooth(which the dentist and doctors have told me most abcessed are a form of strep)Which sent her into a big PANDAS flare up for the whole month of Oct and most of Nov.. we incressed the antibiotic(we had moved her down to mantanince dose) and had the dental work done that was needed.. by the end of Nov and all of Dec 2010 she was back at 99% well again..

 

In Jan 4 of the 6 of us in our family caught strep.. This had her having symptoms of PANDAS for two weeks. but after that she did good 90 to 95% better for the end of Jan and 1st part of Feb, then 99% better at the end of Feb..

 

ONLY for her to get sick This month. Last tuesday he symptoms came back and has been getting worse and worse by the day. Last Thursday she started running a fever and was coughing her head off non stop.. So I took her into the doctors on Friday and they said she has Croup.. They did not increse her antibiotic but did start her on a 5 day treatment of steroids for the croup... since i always heard about Steroids helping with PANDAS.. I had great hopes that this would help both with the Croup and also with the PANDAS flare she seems to be in... but we took the last dose of steroids yesterday morning... and she is not only still coughing but the PANDAS symptoms are worse. :(

 

 

So I am back to thinking about IVIG... but I have so many questions...

 

One is every time my dd has been in a big flare since starting treatment for PANDAS has been when she herself is sick she gets mild emotion/mood symptoms when she is exposed to something.. but the big OCD, anxeity and fears and even bigger emotion adn mood symptoms like crying for hours and hours and not sleeping or letting me leave a room type stuff only comes when she herself has been sick. And what I have found to this point is that it takes an incresse of her antibiotic and then about 4 weeks for her to be back to normal.

 

I'm wondering what would IVIG do better then the antibiotic... everyone is always talking about the wonders of IVIG and how it is the best for PANDAS. but then i read of it taking about 3 to 4 weeks for the benifits of the IVIG to start showing.. read today about a child who had it done 4 weeks ago and yet today would be only day 3 for there child to be having good days... so 4 weeks to see results with IVIG and 4 weeks to be symptom free with antibiotics.

 

Then I have seen kids post IVIG who are still having the mild symptoms when exposed to strep.. and then those who end up with symptoms of PANDAS when they become sick.. again... So I don't really understand what is it about IVIG that is to be better then the antibiotic..

 

PLEASE don't take this post as me bashing IVIG in any ways.. I really know nothing about IVIG and the reason I'm posting at all is I want to know more.. because I"m thinking about if this is something I should be doing for my dd.

 

My G-son had the IVIG 4 weeks ago. It was an awful ordeal over 2 days. His symptoms have worsened so I don't believe it worked for him. I doubt we'll put him through that again, don't think there is any way he would willingly get a second treatment. We were told this would hopefully stop the attack on his brain but were also told that if he gets strep again, he will get PANDAS again. Antibiotics have only been given when a case of strep is reported in the area/school and avoided strep 3 times last year before it snuck in over Christmas break. We have to pow-wow with his Pediatrician and Dr.U from CH of Boston to figure out what we do next. We just wish this episode would subside already and give us our sweet boy and our happy life back!

Thank you for your post. PeacenLove Always

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If antibiotics would have put us in remission, I certainly would have not done an IVIG-

We did Omnicef, saw nothing.

Azithromycin (treatment dose) daily, first 4 weeks were Wows! Then week 5-6, we backslid (not do to another strep infection, or illness, either, well, I don't think, lol)

Tried Augmentin- my dd's gut could not handle it- stopped eating, slid to the floor. Stopped after 3 full days.

Did the steroid burst. Again, too hard on her tummy--- frankly, I think the ibuprofen helped more than a 4 day steroid. Or Curcumin, Longvida or Enhansa for inflammation.

I believe she has been dealing with this, untreated, for a long time. High CamK score. Chronic, but still the wax and wane, but no 'real' baseline.

So we did the HD-IVIG (almost 2 grams) over 2 days.

Welllll.

It's been a WILD ride. Day 17 post IVIG. I have seen EVERY PANDAS symptom in the book come back, at MAX.

Not all at once, coming and going, but wholly moly.

We tried a dose of Tenex, and yes while it stopped her uncontrolable body movements, but it whacked out her separation anxiety and instrusive thoughts. Was it from Tenex, or healing IVIG? Don't know, scared to try a 2nd dose.

Then, today, we are back to our low grade fevers she has had on and off her whole life, 99.9. These fevers are always with no other sickness present-

 

And you know what? I don't regret doing it for a second. Not for a minute. I had to give it a shot. I had to see. I had to try and put this in remission, all other efforts having failed.

 

Jury is still out. Too soon to tell.

 

My .02 cents.

Edited by S & S
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That's why we did IVIG...we were drastically better (versus crisis situation anorexia in 2nd grade) with full-strength long term antibiotics...but dd reacted to non-strep illnesses and strep exposure...and we could see her baseline was changing.

That is the same for my dd. She is never really 100%. Maybe 85-90 then gets exposed and it all goes down hill. Will IVIG treat that?

 

It did for us...but it took time (and also a 2nd HD IVIG). This is what happened:

 

preschool/k/1st: possible low grade undiagnosed PANDAS (off on urinary, sensory, mild ocd, mild anxiety). Overall, normal happy kid.

 

2nd grade: things fell completely apart after 2mo. of untreated strep infection. Full-blown anorexia nerovsa, bipolar behavior, hospitalization (PANDAS/strep finally diagnosed)....eventually back to 80-90% with prozac, azith, advil, in the summer after 2nd gr.

 

3rd grade: exacerbations (even while on azith) with strep exposure (family members) and fever/viral illnesses (fifth's, H1N1)..."baseline" changing. After exacerbation July/June b-4 4th grade CaM kinase ll was in the high SC range --the highest Dr. Cunningham had ever seen. A few mo. previously in April (not in an exacerbation) she was "just" in the high PANDAS range.

 

4th grade: HD IVIG just b-4 4th grade, after 1 week of "turning back the pages" gradual improvement over several weeks/months. Then, another exacerbation (about 6mo. later) after a 1 day fever (feb. of 4th grade). She didn't get back to original pre-feb. baseline (despite pred. and doubling of Azith.) 2nd HD IVIG was done towards end of 4th grade.

 

5th grade: gradual continued improvement in 5th grade. Still on Azith (250mg/day), prozac, daily advil. Recently had a fever (last mo., feb) for several days and did not seem to have an exacerbation this time. :) I wouldn't say she's completely 100%, but she is better now than she was in the beginning of the year. She still has some anxiety, "quirks" but no more than many other 10 year-old kids. Overall, things are going in the right direction.

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This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~

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IVIg goes further to get the child back to 100% or as close as possible. As I said, its healing effects are stronger and longer-lasting.

 

To me, my son isn't completely functional unless he's 90%+. Anything less than that and he still has enough ups and downs and difficulty focusing to keep him away from school and other activities from time to time. That, to me, is unacceptable. At 90%+ (really 95%+), he is able to manage it pretty much 100%. We won't stop until that becomes the new baseline and my gut tells me he will eventually get to 99-100%.

 

In your case, I would definitely do IVIg if the abx aren't consistently bringing her back to 95%+.

 

Well to this point the abx has always got her back there.. until she comes in contact with it again, or gets sick again herself.. She hasn't been off the antibiotic since we found out she had PANDAS.. but it doesn't seem to be enough to keep contact(exposer) symptoms away.. and she herself got sick twice while on the antibiotic.. not with strep but she had an abscessed tooth that sent her into a big flare, and this latest flare she is sick.. with what the doctors say is Croup. but she is still in a flare.. so I'm pretty such she has moved from PANDAS to PITAND.. UNLESS.. the abscess was caused by a form a strep.. and unless the doctor has missed the strep in calling this Croup. We did not do blood work with the Croup.. but we did run her ASO and stuff with the abscess and they were in the normal range..

 

I guess this line "aren't consistenly bringing her back" is sticking with me.. I am sick of bringing her back. would IVIG keep me from having to bring her back... or would the IVIG still only give me a few weeks/months of normal before she is exposed or sick again?? I'm sure there is no 100% answer to this.. I'm just thinking outloud here..

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Great explanation. Let us not forget, however, that the biggest factor at play here is a compromised BBB.

 

Strep infections are just about as common as colds and flu, yet only a very few develop PANDAS. Why? It's pretty obvious to me that when the average person gets Strep, the BBB remains intact and the antibodies never gain access to the basal ganglia and the auto-immune response is never developed. Theoretically (and I think practically as well), once the integrity of the BBB is restored PANDAS goes away completely.

 

You can't eradicate Strep and some people are genetically coded to develop PANDAS once and only if the antibodies cross the BBB. If we could pick one thing to fix and that one thing was preventing compromises in the BBB, PANDAS could be cured or prevented in every case.

 

As always, I'm willing to consider information to the contrary. This is the way I see it.

 

This makes so much sences... if those antibodies couldn't cross the BBB we wouldn't have any problem... Now how to fix that???

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S&S

have you considered daily advil for the fevers?

 

I think it would be a good idea to keep the inflammation down while things are healing.

 

 

Thank you- did not give 2nd dose of Tenex today- think I'm going to hold out on that one- we are actually having a nice day. Still on Azith. 200 mg a day, and this morning I gave Longvida (500 mg curcumin) just took another temp. 100.2- and gave ibuprofen. She has no illness going on. Good thought for me to keep the inflammation down while healing.

And thank you for typing out your story.

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well, for us, while this may have started a couple years ago with good days, etc...but I wasn't even aware of pandas, and may have just written it off as a phase....however, NOW, since the big decline, the tics have stayed, and it's been close to a year since the first tic, and 8 months since the explosion of tics....

 

This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~

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S part of my dd's labs are back and her Lyme Western Blot IgM is neg or absent. And her IgG P41 band is positive. What the heck does that mean? She has Lyme? Was bitten by a tick?

Was your western blot through igenex? Do you have each band listed and a result next to it? LIke a +, a -, or IND? Even if the over all result says negative, if even one B. Burgdorferi specific band is IND or positive, it means exposure to the Lyme bacteria. Though 41 is not lyme specific, it is the first band to turn positive when exposed to Lyme. You could post the exact results here and someone might help you sort them out.

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today, we are back to our low grade fevers she has had on and off her whole life, 99.9. These fevers are always with no other sickness present-

 

One way to check for illness is to test immune complexes over time. C3a complexes and C4a complexes are sometimes associated with lyme (and other illnesses) and C3d complex is sometimes mentioned in cases of autoimmune illnesses such as RA (but again, not an indication of any specific disease). But if your daughter has elevated immune complexes, it shows her immune system is fighting some sort of chronic infection. I would think fever is a sign of some sort of battle going on and not "normal".

 

Maybe something to discuss with whomever did your daughter's IVIG. I was told by our immunologist that my DS's IVIG should have helped reduce his C3d numbers but instead, they were just as high 10 weeks post-IVIG as they were 3 months before IVIG - which suggested an unresolved infection, which then led us to lyme (not pushing the lyme thing - only bringing it up as part of my own story).

 

Something to tuck away. I'll hope instead that you continue to see more good days...

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S part of my dd's labs are back and her Lyme Western Blot IgM is neg or absent. And her IgG P41 band is positive. What the heck does that mean? She has Lyme? Was bitten by a tick?

Was your western blot through igenex? Do you have each band listed and a result next to it? LIke a +, a -, or IND? Even if the over all result says negative, if even one B. Burgdorferi specific band is IND or positive, it means exposure to the Lyme bacteria. Though 41 is not lyme specific, it is the first band to turn positive when exposed to Lyme. You could post the exact results here and someone might help you sort them out.

I called and got a verbal. He said that they were all negative except band P41, that one was positive. When you say the first band to turn positive, does that mean she was just exposed? Does anyone know anything about Lyme being passed on through birth?

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This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

 

Yes, there are some that theorize exactly that, which is why thy say it only goes into remission. According to that model, every time the BBB opens up, antibodies are produced to attack the basal ganglia because the B-cells have classified it as an antigen. It is also theorized that IVIg can re-train the B-cells against the auto-immune behavior. Again, the earlier, the better; before it's well-established.

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This just still goes back to my big question----maybe the infections are cleared, and it's the autoimmune issue at hand. The immune system thinks the brain is an antigen and keeps making auto-antibodies, because the brain isn't going anywhere....and it's these autoantibodies that cause the issues and symptoms, right??

That is a very interessting thought. hmmmmmm but if the brain is always under attack. how do we account for the good days, weeks, months of no symptoms?? It does make sences in a logical way that the brain isn't going away so the antibodies are always there.. but so far with PANDAS there doesn't seem to be much logic in it LOL.. stuff happens that doesn't seem like it should be stuff doesn't happen that seems like it shouldn't ~sigh~

 

There are a lot of things at play when it comes to the immune system - its relative strength, antigen level, cytokine activity, inflammation, etc. The state of the BBB is also a major factor in the case of PANDAS. Perhaps the BBB is more permeable during exacerbations or "bad" periods.

Edited by TexasDad
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