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SOMEONE PLEASE HELP ME UNDERSTAND!


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Hello everyone..please forgive me for bringing this topic up again as I know it has been discussed several times here and I have been advised from some of you so kindly but I am confused. I dislike feeling this way especially if I am trying to help my son heal.

 

Some parents here have said high dose IVIG is more effective than low dose IVIG.

Some parents have said low dose IVIG can make or made their child worse.

Some have said high dose is anti-inflammatory and low dose is pro-inflammatory.

Some doctors only do high dose IVIG.

Some doctors start low dose and gradually increase to high dose.

 

Please help me understand this...It's hard enough understanding PANDAS, well now I find myself wondering..if I am helping or hurting my child with this IVIG issue.

 

Do I see improvement from just 2 IVIG infusions so far? Yes, baby steps..but I see it and he feels it. Four more IVIG infusions to go...so I want to believe I'm helping him.

 

So please..any information will be greatly appreciated.

Oh one more thing...Is there proof, such as on paper that says high dose IVIG is more effective for PANDAS than low dose IVIG?

 

Thanks and best wishes to all..

 

Maribel

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In our experience... Whatever is working for your child and to not be afraid to change course if it is not.

 

I know that is not the answer you are looking for but .... In our experience both PANDAS and LYME treatment protocol helped our older son. Right now, Lyme treatment protocol targeted at our twins specific infections is working. I can assure you if the antibiotics stop working we will be revisiting doing IVIG treatment for them as well.

 

My only recommendation would be to track regression, resolution in symptoms to help make the necessary decision regarding treatment in the future.

 

-Wendy

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I'm sorry, let me clarify myself...when I say IVIG issue I mean IVIG dosage. :wacko:

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I just got a reply back from our LLMD re our son's ordere dosage of IVIG. He said the reason he ordered low was that in his experience it is easier to get insurance approval & then increase dose. The other reason he starts low is to prevent reactions. Our kid is unique. He has had 2 HD IVIG's. I think many of the uniquely PANDAS symptoms are gone. We'll give these IVIG's a whirl now with lyme. He also responded that he hasn't had issues with the timing of IVIG, often using it for autism induced lyme. Dawn

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We do 1g per kilo every 21 dys.That is working for us.This is a very touchy subject.The best advice is to find the best MD you can ,someone who you completly trust.

 

Melanie

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I'm sorry... I was trying to make analogy by referencing our situation.

 

For some ldIVIG monthly has worked, for some hdIVIG has worked, for some starting out low and moving higher has worked, for some the repeated hdIVIG have worked, for some the repeated hdIVIGs have not worked. etc. etc. etc. AND, rightfully you are trying to figure it out in advance for your child. We all have treatment bias for what worked for our children. I encourage you to remain flexible and do what works for your son. If the low dose monthly don't end up helping.. don't be afraid to change course and move to hdIVIG. Melanie is right.... its been a touchy subject on the forum and there are several threads about the topic in the history.

 

For us, the hdIVIG and high dose antibiotics were extremely helpful and we hit many back to back days of 100% six month post his last treatment. Since then, we've been treating for Lyme with some regressions and improvements again.

Edited by SF Mom
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its been a touchy subject on the forum and there are several threads about the topic in the history.

 

 

just want to be sure that everyone should feel comfortable about sharing their experiences without concern about a subject like this becoming touchy.

 

On a forum such as this, members should be able to disagree *agreeably* and not be shouted down if they may believe a different treatment option/dose or whatever worked best for their child. The good thing about these forums has always been open sharing of info and experiences. Take what is helpful for you and leave the rest for someone else, and *ALWAYS* consult a qualified professional before trying anything you read here on your own.

 

As this thread is a question about IVIG dose, I do hope everyone with info will feel free to post about it if they would like to, and not feel intimidated because someone else may have a different view. Not everyone's child is dealing with the exact same issues, and so responses to things varies.

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I am curious about these same questions. My daughter had IVIG (1.5g) a little over a month ago, and she is worse than she was before. I know that sometimes things can get worse before they get better, but I'm getting nervous that the IVIG will not work for her, or will not work at that dose. We trust our PANDAS doc very much. There are just so many variables, and my daughter has had this for quite a few years now. She is quite physically ill as well, so may be a difficult case.

 

Hello everyone..please forgive me for bringing this topic up again as I know it has been discussed several times here and I have been advised from some of you so kindly but I am confused. I dislike feeling this way especially if I am trying to help my son heal.

 

Some parents here have said high dose IVIG is more effective than low dose IVIG.

Some parents have said low dose IVIG can make or made their child worse.

Some have said high dose is anti-inflammatory and low dose is pro-inflammatory.

Some doctors only do high dose IVIG.

Some doctors start low dose and gradually increase to high dose.

 

Please help me understand this...It's hard enough understanding PANDAS, well now I find myself wondering..if I am helping or hurting my child with this IVIG issue.

 

Do I see improvement from just 2 IVIG infusions so far? Yes, baby steps..but I see it and he feels it. Four more IVIG infusions to go...so I want to believe I'm helping him.

 

So please..any information will be greatly appreciated.

Oh one more thing...Is there proof, such as on paper that says high dose IVIG is more effective for PANDAS than low dose IVIG?

 

Thanks and best wishes to all..

 

Maribel

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Msmom, my dd was worse after first one four weeks post, even worse at 6 weeks post with movement disorder, but it did help ocd a lot. My doc says for autoimmune disease it takes up to six months to see improvement, that's with every 21 day doses. So one dose may just not be enough, but for some even without more ivig doses they see improvement 3 to 4 months post. I know my dd has an autoimmune disease, I knew the ivig helped her ocd, I say her ana go from 2560 speckled to 80 centromere and her C4 go from 7 to 14. I saw her cunningham antidopamine antibodies go from 4000 to 1000. And my dd inspite of 9 days of asceptic meningitis, she asked for more (ivig) becuz she said a cloud was lifted, although physically she looked much worse with her movement disorder. I knew it was doing something becuz of her blood markers and her feelings. Although without those, I would have thought she was much worse! It was a very hard time. Especially when after years of seeing your child sick, begging for care and treatment, and it looks like it has not helped. This forum is very helpful, but this disease still has many unknowns, and causes and treatments may be different for some. Really fight for understanding of treatment(read,call experts) insist upon measurable markers of success or decline,(blood tests), never knee jerk from one or two comments on this forum, and always always always go with mother gut instinct. (listen to yourself and never let anyone try to convince you they know better than you. Done that and the docs were always wrong, pretty much every time)

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Nevergiveup

 

I totally agree- it is SO important that we feel empowered to go with our mommy instinct. It is great to have smart docs in ourcorner, but in the end, there are still SO many unknowns- we must be the driver of the bus. We have to do our research, know our kids, and follow the path that is WORKING.

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