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IVIG & turning back the pages


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My 5 yo had 1 gr/kg IVIG in late March. We had turning back of pages with some of his tics that we had not seen in awhile - especially a cough-sniff thing he used to do. Within days of IVIG it started and then it took 2 months for it to slowly fade and go away...

 

I am sorry you are feeling paralyzed...I know the feeling. My husband usually has to be the one to talk me down and pick me up!!

 

Stephanie

 

Hi -

 

I guess I'm too stressed to research anymore right now. My youngest had IVIG on May 10th & 11th - - so just about 4 weeks ago.

 

Up until this point there was definite improvement in his verbal tic - - though it was "consistently inconsistent" - - but that, in and of itself, was the improvement. Today, though, his verbal tic is bad - - it hasn't been that way all day - - it has been worse as a whole today - - but there have been periods of it being really intense - - like close to the worst it's ever been. I can't compare it totally to the worst it's ever been - - because it was constant ticcing then. But, today there have been periods of time when there have been a couple hours bursts of ticcing. I know this is crazy - - but I'm almost paralyzed with fear...

 

Please tell me your "turning back the pages" experiences - - I need to get some perspective - - and I also need to calm down...

 

Thanks.

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I know exactly how you are feeling! Post IVIG initially we would see a flair of stuff lasting a couple days, then for a day, then for a 1/2 day, then a couple hours.... now a couple of minutes. The motion, intensity, regularity, length of time have all faded. For us, these flairs signified improvement around the corner but I'll admit very scary because you do revisit stuff. Just last week, we revisited eye TIC very briefly but now its gone.... we had not seen it for months.

 

When our son was exposed to strep post IVIG and regressed we saw a slow baseline adjustment over three weeks that were not TIC related headaches/stomaches daily (week 1), mood liability (week 2) and then OCD (week 3). Our son's issues were never predominately OCD related and when he started hitting his head to turn his brain off it was very scary but I knew at that point the baseline had changed.

 

We are currently 21 weeks post our third treatment. We saw huge improvement week 9.5 and 14 weeks.... It felt like every 3 weeks there has been a baseline adjustment of improvemtn. About three weeks ago we switched up his medication by lowering Azithromycin and adding Omnicef. At that point he still had mild very infrequent throat clear and now its gone.

 

I hope that gives you some perspective.. its a very slow process and there are flairs. Hang in there.

 

-Wendy

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Hi Wendy,

 

What was the IVIG dasage and schedule beteween Infussions?

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I know exactly how you are feeling! Post IVIG initially we would see a flair of stuff lasting a couple days, then for a day, then for a 1/2 day, then a couple hours.... now a couple of minutes. The motion, intensity, regularity, length of time have all faded. For us, these flairs signified improvement around the corner but I'll admit very scary because you do revisit stuff. Just last week, we revisited eye TIC very briefly but now its gone.... we had not seen it for months.

 

When our son was exposed to strep post IVIG and regressed we saw a slow baseline adjustment over three weeks that were not TIC related headaches/stomaches daily (week 1), mood liability (week 2) and then OCD (week 3). Our son's issues were never predominately OCD related and when he started hitting his head to turn his brain off it was very scary but I knew at that point the baseline had changed.

 

We are currently 21 weeks post our third treatment. We saw huge improvement week 9.5 and 14 weeks.... It felt like every 3 weeks there has been a baseline adjustment of improvemtn. About three weeks ago we switched up his medication by lowering Azithromycin and adding Omnicef. At that point he still had mild very infrequent throat clear and now its gone.

 

I hope that gives you some perspective.. its a very slow process and there are flairs. Hang in there.

 

-Wendy

 

Hi Wendy..

i know we've spoken before and sorry if all these are repeat questions....when i get a flare over here...all the info in my head seems to fly out the window...gets comp;etey erased..and i feel like i have to start anew....

we had a very bad flare about 10 days ago..and i'm steel reeling....

 

when you say weeks 9-14..are you saying that 5 week period...or week 9 then week 14?

oh and i'm sorry that was after the the 3rd treatment....was there any progress with the first or second ivig?

 

if you don't mind ...at what intervals did you have 2nd and 3rd ivig...ie..2nd one was 3 months post 1st?

 

as you probably remember...(your brain works better than mine. :angry:) ..my son is a ticcer also..what ocd(more compulsioney) there is, is only 10%ish, some sensory stuff, self stimulation(i think that may be related to anxiety now that i know more)....he recently told me he always feels anxious....

Is ocd now the problem....how bad did the ocd get?

how long did he hit his head banging last?

finally for now...you are about 6 months post ivig 3.....when was your first ivig???

 

Thanks for sharing all your info Wendy!!!!

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I have a thought, hope you don't mind, but for those here, ....how do we know that the 'flairing' isn't a reaction to the treatment and actually is making things worse for a time....and then when that particular flair backs down, it is kind of an illusion that things are getting better, but in reality, it is just a releif, so we think things are better. sorry, sf, I know you don't like me asking this, I know some have had symptom releif in the long run, but it is really a rocky road,....for me, I'd rather take the evil I know for now, than to add more to the mix. maybe I would be happy once the second evil went away, but does that mean it is all better? don't know....

 

candk, where did you have the ivig and what did hte doc prepare you for? (p.s. my son is pretty much just what Fixit described for her son)...

 

is this a given that things will get worse, or is this just what other parents report? does complete resolution ever happen?

 

I mean, I've had flairs on my own without ivig, and then when things settle a little, I could say 'oh looks like he's finally healing'.....but its not from ivig cause we havn't had it.....is it possible that for some, its not exactly the antibodies alone that is the problem? if it is, then those things have to be addressed before we can count on ivig doing anything positive.....anyone understand what I'm getting at?

Edited by faith
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1.5 m.g./k.g. over two days. Approximately every 8 weeks: Sept, Nov, Jan... They were not scheduled treatments but we were waiting for regressions. Second treatment was needed after two exposures to strep, third treatment was questionable. When we scheduled the third treatment I thought he was regressing but between scheduling IVIG and treatment date he started to improve again. Dr. K felt the third treatment was debatable but went ahead anyway to protect him through winter months. OUR experience was all OCD remitted shortly after third treatment and we did not have the stirring up effect with the OCD.... only TICs.

 

-Wendy

 

 

 

Hi Wendy,

 

What was the IVIG dasage and schedule beteween Infussions?

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Over that period to time: week 9.5 and week 14 we saw marked improvement.... then it slowed dramatically for the next three weeks.

 

He was hitting his head just prior to second treatment. We retreated so that stopped almost immediately after treating.

 

See my other post for additional specifics. Hope that helps.

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Faith, I don't mind you asking at all and I truly understand your fears and think you need to go with what you feel is best for your son. BUT, do not misinterpret the flairs.... you are right, they are reaction to the IVIG but please read up more on Herxheimer Reactions. Its basically worse before better concept because they are reacting to toxins 'die off'. The flairs are brief (initially a couple days, now minutes) and they are 'scary' because they come out of no where and you think your child is regressing but ultimately they do get better. Everything has faded for my son... even his reaction to others in the family being sick. It is exactly as Dr. K described. BUT, its hard to grasp the concept until you've experienced (similar to having a baby..... until you have a child you will never fully understand being pregnant, birthing, raising, etc)

 

Yes, my son is better, better than he has been in years. Minus one minor TIC of rubbing his nose that currently comes in a 'flair' for about a minute over the course of a day or days. We have had some TIC free days.... two this past weekend. It is not entirely gone and is fading. I will definitely update when it is gone for a week, a month, etc. It takes a long time for CaM Kinase to fall and things to settle out.

 

For my son and known exposure to RF, I do not think we would have seen this type of resolution/recovery so quickly without IVIG. It has truly been nothing but a miracle. I'd like to stop posting and head back to my normal life but right now I do still feel the need to help others through this process. Hopefully, I'll recover soon!

 

-Wendy

 

 

 

 

 

 

 

I have a thought, hope you don't mind, but for those here, ....how do we know that the 'flairing' isn't a reaction to the treatment and actually is making things worse for a time....and then when that particular flair backs down, it is kind of an illusion that things are getting better, but in reality, it is just a releif, so we think things are better. sorry, sf, I know you don't like me asking this, I know some have had symptom releif in the long run, but it is really a rocky road,....for me, I'd rather take the evil I know for now, than to add more to the mix. maybe I would be happy once the second evil went away, but does that mean it is all better? don't know....

 

candk, where did you have the ivig and what did hte doc prepare you for? (p.s. my son is pretty much just what Fixit described for her son)...

 

is this a given that things will get worse, or is this just what other parents report? does complete resolution ever happen?

 

I mean, I've had flairs on my own without ivig, and then when things settle a little, I could say 'oh looks like he's finally healing'.....but its not from ivig cause we havn't had it.....is it possible that for some, its not exactly the antibodies alone that is the problem? if it is, then those things have to be addressed before we can count on ivig doing anything positive.....anyone understand what I'm getting at?

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Post IVIG can be so dramatic. We are 17 weeks post our 1.5 dose IVIG and we have had a bumpy ride, but the lows keep getting better. I would say that at certain points, like 4 weeks and 8 weeks post IVIG, I thought we were failing. We are still bumpy, and I still get paralyzed, but I have to say that the further out you go from the IVIG, the better it gets. My son is currently ranging from 75% to 85% better now.

 

I believe that Dr. K said that to only consider a possible relapse if you see a downward trend for greater than 2 weeks.

 

Hang in there and PM if you ever need extra reassurance.

 

Elizabeth

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I have a thought, hope you don't mind, but for those here, ....how do we know that the 'flairing' isn't a reaction to the treatment and actually is making things worse for a time....and then when that particular flair backs down, it is kind of an illusion that things are getting better, but in reality, it is just a releif, so we think things are better. sorry, sf, I know you don't like me asking this, I know some have had symptom releif in the long run, but it is really a rocky road,....for me, I'd rather take the evil I know for now, than to add more to the mix. maybe I would be happy once the second evil went away, but does that mean it is all better? don't know....

 

candk, where did you have the ivig and what did hte doc prepare you for? (p.s. my son is pretty much just what Fixit described for her son)...

 

is this a given that things will get worse, or is this just what other parents report? does complete resolution ever happen?

 

I mean, I've had flairs on my own without ivig, and then when things settle a little, I could say 'oh looks like he's finally healing'.....but its not from ivig cause we havn't had it.....is it possible that for some, its not exactly the antibodies alone that is the problem? if it is, then those things have to be addressed before we can count on ivig doing anything positive.....anyone understand what I'm getting at?

 

Hi Faith

i'm a scardy cat too...i know what i have...what will i get.....but that is almost the every day, every hour....and i question what is improvement or was is so bad that now bad looks good??? and i appreciate you asking some of the hard questions

on the item i put in bold....i thnk that is the case why dock thinks ivig is..in the long run..the only answer for most...

ds did in january come up positve for myco p igg....his original cam in nov09 was only 105(still above normal)...(he was taking taurine at the time)....

i think ds mcyo number is coming down...or gone..

But......ds cam is now 160...his urinary neoptrens were 980 something (an inflammation marker that has been related to autism, ms, hiv....)

so i am wondering if the cam and the urinary should be taken together...as autoimmune/inflammation marker....

his hippuric acid was high too ...indicating something bacterial or fungal going on in the gut......

I do not think i am fighting an infection at this point...unless it is in his gut and/or its all intestinal at this time.....

i do think it is autoimmune, as the numbers indicate, that it is now just fighting itself.....

doc t had a good annalgy...its like asthma....something triggers the attac(cats, dust) then the body can't stop unless you take an inhaler or something...

smith said something like..we (our bodies)can drive at the speed limit and accelerate and come back down....they are already going 85, something hit thier sytem and they go 110 and maybe just keeps accelerating...and maybe goes back to 85 maybe...and maybe no brakes at all...thing is to get it back to the speed limit...

Does that make any sense?

I am so close to pulling the trigger on ivig...the pieces are coming to gether in my small mind....the last flare was pretty bad....

scott smith does have some tricks up his sleeve and some tests to run...

that last flare may have been after i realized i may have messed up his meds...and had to essentially start over

another friend of mine (very smart) said that if there is a virus or somehing else they may have certain life cycles....i think ds may have something with a 12 day cycle...not sure

so maybe just like with ivig,after each relapse a better base is set, i hope!!!

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We are 2 1/2 weeks post IVIG and things are really bad. My son said OCD WON'T LEAVE HIM ALONE. I'm still waiting. Hoping it is the "die off".

I read and I get sa aggravated.I swear I wish there was a tool kit I could buy that says what to do for sure.I still havent heard of any 100% cured kids and when I go on Dr Ks site the stories are from 5 years ago. I rely on this forum soo much and the stories and results from all of my friends(you guys).

 

Melanie

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