Looking for others who have tried IVIG
We've been doing biomedical treaments for almost 7 years and IVIG is something we've talked about, thought about, but haven't heard much about. Is there anyone out there who has tried this? What was the outcome? My son has had secretin, IV glutathione, tried Transfer Factor, none of which gave us results; at least not remarkable results.
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I wish I never heard the word Autism
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I was diagnosided with CVID
I was diagnosided with CVID after 10 years of wandering the medical wasteland. I start my first IVIG this week and would like to talk with others who are doing this. I live in the Philadelphia area and have found one other person locally with CVID who has been on IVIG for past 10 years. I am curious about other people's experiences potential side effects and whether I will have fewer infections.
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Best of luck with your first
Best of luck with your first IVIG! I'm not familiar with CVID; could I ask you what that is exactly? I have heard some positive things about children with autism who had IVIG therapy; improvements in the area of eye contact, language, and decrease in stimming. Keep me posted as to how things go for you!!
Hi Daina - I had great
Hi Daina - I had great success for my older son using IVIG. I would like my younger son to get IVIG as well. It's something we are in the process of working on right now. I know many parents who have also have seen wonderful results.
Please feel free to send me a message and we can chat.
Ed
Hi Ed! What type of results
Hi Ed!
What type of results did you see with your son? My son is pretty much nonverbal; when the intent is there he can get out what he needs and on occasion surprises us with new language, longer sentences, etc. He is a very smart boy but needs help with chronic inflammation that we know exists, he has a lot of verbal stimming, he is often hard to reach; common autistic characteristics. Have you tried HBOT? We're sort of going between IVIG and HBOT - which to try first. Both are financially difficult for us. Our DAN! doctor feels they are both worth a try and has left it up to use to decide which way to go first. Please share any info you have that may help us come to a decision. No pressure! :)
Daina
Hi Daina, what I saw was
Hi Daina, what I saw was healing. What I saw was improvements month to month. Not every month's infusion produced the same level of improvement, but each month brought Jarad to a healthier place.
The most noticeable improvements were in the areas of language, cognition, and behaviors. It was almost like lifting a veil and seeing my son begin to emerge into the light.
It was telling to see how anxious Jarad was to get the infusions. By the time we began IVIG Jarad had been stuck and poked and had had so many tests if he even thought we were going to a doctor’s office he would begin to cry.
Not so with the IVIG. Jarad would patiently lie down and watch videos during the entire procedure never once crying or attempting to remove the needle from his arm.
I would recommend getting the IVIG before thinking about doing HBOT. You might not need HBOT if the IVIG is as successful for you as it has been for many children. I don’t say this nonchalantly. I know how terribly expensive both treatments are. Luckily, the IVIG for Jarad was covered by insurance.
I believe the order of treatments and therapies are very important. Maybe at next year’s conference we should more fully address this issue.
The foundation is the diet. Heal the gut as much as possible with good nutritious food, slowly add the supplements needed, remove all possible toxins from the child’s environment, do ABA (if your child is still young enough), and then access how your child is progressing.
This may take anywhere from 4 months to a year. Always, always, always pay close attention to your child’s bowel movements. You want BMs that are formed, brownish and sink to the bottom of the bowl.
Until you heal the gut other therapies like auditory integration and vision therapy will likely have limited success. IVIG helps heal the gut.
My younger son, Ian, had HBOT before his gut was healed and it had no effect.
Focus all your energy and attention for now on correcting the great damage that is probably going on in your son’s digestive track.
Two great books to read are, “The Second Brain,” by Gershon and “Green for Life,” by Boutenko.
Please let me know if you want to chat.
Ed
Thanks so much for the
Thanks so much for the detailed response! We've been doing biomedical treatments for almost 7 years, have done many, many things, and finally have a healthy gut!! WHOO HOO!! My son's last microbiology stool test came back clean...no staph, no strep, no yeast, no funky bacteria...the first time EVER in all that time! Anyway, it sounds like IVIG is the logical step for us before HBOT. I was encouraged to hear that your insurance company paid for IVIG. How is that? I'm a teacher, with decent insurance, yet they are not willing to pay for much. I was shocked with they paid for the B12 shots and sublingual B12 mixture! Anyway, thank you so much for your response! I love this site and being able to hear from other parents going through the same thing.
Daina
Hi Daina - I will be able to
Hi Daina - I will be able to answer you tonight when my boys go to bed,
Ed
IVIG
Hi Ed,
I am new to this sight but have just joined and was reading about IVIG and your comments. We have been doing IVIG, actually we did our first set of 6 treatments every 28 days and then we took a 3 month break and nowhave restarted it for our next 6. My son, Brandon has seizures and high strep aso and EBV. His seizures and everything about him got better on the treatment and then when we took a break it got worse again. A few other docs that I spoke that do IVIG said that we would need to continue it for at least 1 1/2 years to try to "heal" the brain. I am willing to do anything but our insurance is still fighting on how much they want to pay. Can I ask how you got coverage for your son? R u still doing the treatment? Thx. Dawn