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Does anyone regret doing IVIG?


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After our son's 1st round of IVIG, we saw significant improvement - probably 70% better overall within 1-2 months. But we did also see a brand-new symptom: his 1st vocal tic, which grew progressively worse from a seal-like bark to a high-pitched screech. The new symptom surprised us. Didn't seem like "turning back the pages."

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

We've only done one low dose IVIG (2 1/2 weeks ago)- my daughter's aggression got slightly worse (it had improved considerably), but she also has developed a high pitched screech that we had not seen, er, I mean heard, before.

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Fixit, I don't think LaurenJohnsonsMom ever came back with a real update so I'm not sure if we should assume that her daugher only has a slight eye twitch. I could have just missed an update though... She might not be have the sneeze tic but I don't know if that means she has seen no negative effects from the IVIG.

 

 

 

these are kind of questions i am looking for....Ds has moderate to severe tics...compulstions???...some tridkkl...(hair pullilng)

is there a possibilby of exchanging these problems for more ocdish stuff/etc

 

I noticted Lauren on the today show,,,post ivig has a slight eye twitch???

very very mild and better than the perpetual sneezing....

I would take the eye thing in a heart beat for what is going on now....

 

And with bubbasmom.....it hasn't been 4-6 weeks yet.....

so I am hopeing she will report in a couple of weeks that things are better than when she startd

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it was more of an ..for instance

i was talking about what is on youtube on the today show.....if you notice she had something so mild with her eye......

i would say that is probably better than sneezing every 5 seconds...

 

Fixit, I don't think LaurenJohnsonsMom ever came back with a real update so I'm not sure if we should assume that her daugher only has a slight eye twitch. I could have just missed an update though... She might not be have the sneeze tic but I don't know if that means she has seen no negative effects from the IVIG.

 

 

 

these are kind of questions i am looking for....Ds has moderate to severe tics...compulstions???...some tridkkl...(hair pullilng)

is there a possibilby of exchanging these problems for more ocdish stuff/etc

 

I noticted Lauren on the today show,,,post ivig has a slight eye twitch???

very very mild and better than the perpetual sneezing....

I would take the eye thing in a heart beat for what is going on now....

 

And with bubbasmom.....it hasn't been 4-6 weeks yet.....

so I am hopeing she will report in a couple of weeks that things are better than when she startd

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THIS is exactly part of what i was fishing for...

 

Worried dad....did the vocals subside.....how long till that develoepd...and how long till it went away

 

Peg...how soon after did you dd start after ivig...and is her's still going

 

My ds started 3 days into biaxin/2nd day pred.....HERXING???? about 40 days ago

Today is pretty bad!!!!!!!

Pollen count wednesday was about 6000!!! yesterday with some rain was 2000!!! and today is sunny so i expect it is back up to 4000ish

note...during winter you get counts of 0-5 summer 7-25

are we all noticing the vocals aroung the same time??

Is this somethng that would have come out right now anyway?

ARE other things better...or would be markedly better if it weren't for the screech.....DS has gotten to that high C that makes my ears hurt/tingle/pain

 

i just asked ds and he said it doesn't feel like somthing in there....but if he doesn't do it he might explode,(and then he smiled).... cant really explain things sometimes...he can explain tics usually(feels like somthing)

so is that a tic or a compulsion or ocd?

 

on aug xr maybe 20 a day

 

 

After our son's 1st round of IVIG, we saw significant improvement - probably 70% better overall within 1-2 months. But we did also see a brand-new symptom: his 1st vocal tic, which grew progressively worse from a seal-like bark to a high-pitched screech. The new symptom surprised us. Didn't seem like "turning back the pages."

 

 

Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

We've only done one low dose IVIG (2 1/2 weeks ago)- my daughter's aggression got slightly worse (it had improved considerably), but she also has developed a high pitched screech that we had not seen, er, I mean heard, before.

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Faith,

 

In your experience being on the boards so long, has any parent reported seeing a totally new behavior resulting from IVIG rather than a significant escalation of a previously seen behavior?

 

I'll use my girl as an example. Court, 10, has really bad behavioral regression, so I might prepare myself to see that amplified and for her act like a 4 y.o. if she had IVIG, temporarily. But she has never exhibited raging, throwing, violent outbursts.

 

Do you recall any incidents of "activiation" of never before seen behaviors?

 

Thanks,

Jill

 

Jill,

 

I've only been looking at the PANDAS board since October, so the IVIG and PEX and steroids are kind of newish to me as well, so I'm basically familair with what has gone on in the last six months or so regarding such. I will say tho, that what I see across the board, is basically the same as I've seen on the TS side with our natural treatment talk and all the alternative treatments, .. no one size fits all. Some respond to certain things, while others have a bad reaction to the same. I've experienced this myself in doing different things over the years.

 

As far as the treatments here, I've seen and talked to somone who reported a vocal erupt after starting steroids, and of course, worrieddad and peglem are telling their experiences above. I have no doubt that some kids do markedly better, but I can't discount that some don't. And some of the reports just downright scare me. Wether it is temporary or not, I can't use that as a deciding factor, because I have a functional child right now, despite some vocal tics, and being not so new to having a child with these kind of symptoms and seeing the good days and the bad days, I'm not ready to take the chance of changing what I have for something non-functional, or not being able to go to school. Yes, I do know someone here who has not been able to send their girl to school lately after IVIg, again, I pray its temporary for them, but nonetheless, its happening.

 

I am not even sure my son fits into this category (PANDAS), and I'm okay with the possibility that he is not. I have no doubt that something autoimmune may be going on in all our kids with this, but Until I know for sure, I don't want to take the chance of doing anything that may not be for him. We have a noticeable vocal tic, yes, but until I know its the 'pediatric autoimmune neuro-psych disorder associated with strep'.....I don't feel comfortable or confident enough with an invasive, expensive treatment such as IVIG,,, just to see how it goes. That's just me. just me....

 

Faith

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My son has not been the poster child for IVIG, BUT he has made improvements. Do I have regrets, no....sometimes disappointed that improvement have been slow, when others have had the speedy ones. All of our children are different, mine has autism, with other things going on, than a NT kid, so you have to take that into account. His tic became debilitating to where he was ostracized from school and all public places, so what kind of quality of life was that? It continues to be a bumpy road but he continues to make slow steady improvement.

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Absolutely, Faith! All angles must be examined as carefully as possible. There's the research that may not apply directly to your child and the history shared by others. We put our emotions aside to the best of our ability, conduct a risk/benefit analysis for our child and then pray we are making the right decision based on our specific circumstances.

 

These are questions that must be discussed. Not asking questions won't eliminate the risks.

 

Thank you all for sharing the cases with new glottal tics.

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faith-

 

I completely understand your search for answers.

 

I can 't remember- did you have the Cunningham test done?

 

I will just add my 2 cents.

 

I had pex done on both of my girls. One in October, one last month. I have never, not for one minute, regretted it. In fact, I will do it for them again, need be. They are not where I want them to be, but pex gave each of them a HUGE improvement. We will (hopefully if things remain calm) re evaluate after they are one year post pex. I really wanted to give them the chance to beat this without using donor antibodies. I guess only time will tell.

 

It still hangs over my head- the fact that Dr K is so adamantly for IVIG. I wonder if my girls need it. But, right now, I can't stir the pot, so to speak. I am hoping that we will hear more long term success stories from IVIG in the next 6 mos, which will give me the confidence to go that route should we need to. I know some on the board have had recent success, but I want to see a year of sustained improvement at a minimum.

 

It is a much harder choice to make when your kids are relatively happy and funcitonal. That being said, we all want our kids to funtion at their potential. Such hard questions and choices. Was I even a parent before pandas (it was so easy then- like a fairytale)?

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It is a much harder choice to make when your kids are relatively happy and funcitonal. That being said, we all want our kids to funtion at their potential. Such hard questions and choices. Was I even a parent before pandas (it was so easy then- like a fairytale)?[/b]

 

I just want to cry.....things started to backslide about 3 days off of aug...now that we are off everygthing...the screams are terrible and his motors are pretty severe too!!! why can't i just be a regular mom...and wonder if their teeth are staight,,or will they be tall, or he has a lilsp....lets work on that.....

you know your regular, everbody has something wrong with them problems.....

 

DC....what were your kids symptoms again........and what % better are they?????..i'm sorry and their ages again

and who did you do pex with???

 

I am so happy and so JEALOUS..... i have never considered myself a jealous person...things don't impress me......

BUT NOTHING CAN BE SO ENVIOUS as having a healthy kid!!!!!!!( iknow you are not a 100% but you are on your way!!!!!!)

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My husband and I are struggling with that same question....ds10 doing the best since augmentin XR began 30 days ago, however ADHD is what we now have to deal with. After all we've been through...ADHD is a piece of cake! Having said that, are we missing an opportunity to help him completely recover (by not getting IVIG) and not to mention he hasn't tried getting off antibiotics yet.? What if everything returns and he just isn't successful without antibiotics and now more time has passed, he is older, has had this longer...have we decreased his chances for IVIG to be successful? What if we say that this is good enough and then this bright child hates school and is failing? Will we always wonder..."what if?"

 

When PANDAS hit the T.V. show "Mystery Diagnosis" this summer...will we even be able to get an appointment for an IVIG?

 

Won't all of these doctors be overwhelmed?

 

For right now, in THIS MINUTE, (which is how we have learned to live) all I want to do is take a deep breath, enjoy the relatively happy child, and take a moment to look up at the things in life that I almost forgot existed!

 

I pray for each of you, your families and all of our precious children each night!! Dear Lord, give us guidance to make the best decisions for each of our children.

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It is a much harder choice to make when your kids are relatively happy and funcitonal. That being said, we all want our kids to funtion at their potential. Such hard questions and choices. Was I even a parent before pandas (it was so easy then- like a fairytale)?

 

Now that we have a doc here locally who believes my dd8 needs IVIG, what I have been wanting for her for a year, I am worried. She is doing so well right now. Her recent round of cefzil in addition to her zith has really helped her and she's doing so well. But she's still reliant on abx. She can't get off the zith without back sliding. This is what is prompting our ped. neurologist to get her IVIG, even if at a low dose. I want it for her but I am afraid of what might happen. I know that I can't rely on the abx forever so I need to go to the next step. It's still scary though.

 

I don't believe I was a parent before pandas for long so I don't even know what that would be like. I remember when my dd7 was born and she had a hemangioma birthmark on her forehead. The year before, I had just had a premature twin birth and one of my children died. So I thought can't I just have one child who doesn't have anything wrong with them? At the time, if I had known about PANDAS, I would have been happy with "just" the hemangioma birthmark, even though all her baby pictures have a huge red, puffy mark above her eye. dcmom, you got me all melancholy! ;)

 

Susan

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I think that is very true.... it is very hard to have a good gut feeling on what to do with the inbetween kids... My son is sooo mild compared to what I read here. He has a minor throat clearing and a minor eye blink... his teachers said they have not seen it at all at school. He had past minor ocd... so minor that it came and went before I even knew what pandas was.... Sure I think he has some other possibly ocd related things he does but really, nothing that anyone but a mom looking for it would pick up on. He's quirky... but everyone who knows him attributes it to him being very bright... in my pandas head now I attribute it more to the pandas.. but is his brightness due to the pandas too.. I don't know. So I watch him, I see his inflexibility, his mild meltdowns (that were not as mild a year and a half ago) and listen to my friends talk about their non pandas kids who are also at times inflexible and have irrational meltdowns... and I think how the heck should I know what to do... Do I tell myself that the demon I know is better than the demon I don't know.. don't rock the boat... or do I try to figure out if pandas has a greater grip on him than I realize... For now, I am watching...waiting... hoping for some sign that lets me know to let him be, he's going to be ok or to step it up a bit. I am grateful for how minor this is and that it's not really impacted our family to as great a degree as it has to many but it definitely makes it hard to decide what to do for him and what to just accept as him.

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