Jump to content
ACN Latitudes Forums

Repetitive IVIG


Debbie1
 Share

Recommended Posts

I also wonder if this may be different for kids with vs. without immune deficiencies. When we got his test results early this year, we noted that my littlest guy basically doesn't make antibodies to much (he has CVID), so I wouldn't be surprised if he didn't make antibodies to IVIG either. My older is also immune deficient. We're still doing IVIG every 3-4 weeks, and still are 99.9% symptom-free for PANDAS. Actually 100% almost all days.

Link to comment
Share on other sites

We are doing about 0.9 g/kg. So that would be high for immune deficiency (which they have) and low for autoimmune disease (which they also have). I would consider it "middle" dose all in all. I couldn't be more thrilled with the results.

 

mom that is great!!!! being that your children are immune deficient..is this something they will have to do indefinitley ,,,till purberty...2 years...any frame on that?

Link to comment
Share on other sites

We are doing about 0.9 g/kg. So that would be high for immune deficiency (which they have) and low for autoimmune disease (which they also have). I would consider it "middle" dose all in all. I couldn't be more thrilled with the results.

 

I've heard a couple of families reporting that "middle dose" with more frequency (how often are you doing the .9g/kg?) is showing great promise and results.

 

Do you mind sharing if there are certain levels/blood markers you are looking to reach to guide you with regards to frequency and duration? I believe NGU is watching total IgG to be in the upper limit and some of Cunningham's levels. Also, do you think that this approach applies more to the group of PANDAS kiddos, who have been fighting this for several years, perhaps, pre-teen/pubescent age range, and also show immune deficiency (probably for same reason)?

 

I know this isn't a newsflash, but it just seems the pivotal piece in treatment course is when the condition is recognized and treated or how long it goes unrecognized &/or mis/not treated.

Link to comment
Share on other sites

Momtopandas kids are young, my child is 14 started regular ivig at 13. My dd also gets about .92 every 18 to 21 days. Momtopandas you said every 21 to 28 days is it more 21 than 28? I noticed a big difference when we switched from 28 days to 21 days, her symptoms would return at about day 18. My dd still has some tics especially after viruses, but she is smiling, socializing, sleeping on her own, eating, engaged in conversation, school work is a breeze, her fatigue is gone, her adhd gone, her chronic infections are gone, she does not physically look sickly (bags, skin color). We will be testing her trough levels again in December and she will be getting another iga level test. I am going to watch that number and check with my doc about anti iga antibodies. Hopefully she will still have a raised iga.

Link to comment
Share on other sites

Momtopandas kids are young, my child is 14 started regular ivig at 13. My dd also gets about .92 every 18 to 21 days. Momtopandas you said every 21 to 28 days is it more 21 than 28? I noticed a big difference when we switched from 28 days to 21 days, her symptoms would return at about day 18. My dd still has some tics especially after viruses, but she is smiling, socializing, sleeping on her own, eating, engaged in conversation, school work is a breeze, her fatigue is gone, her adhd gone, her chronic infections are gone, she does not physically look sickly (bags, skin color). We will be testing her trough levels again in December and she will be getting another iga level test. I am going to watch that number and check with my doc about anti iga antibodies. Hopefully she will still have a raised iga.

 

Thank you so much for sharing your experience! Maybe the age plays a role in the frequency? My dd will be 11 next month, looks pale, pupils still widely dilated, eye area looks sickly, although the livido reticulitis has not yet returned and it has been 6 months since her HD ivig.

 

NGU-Does/has your dd had issues with acne and, if so, have you noticed any difference since beginning the routine ivig regimen?

Link to comment
Share on other sites

Jag

 

My dd is still trying to get through puberty has a year to go, we are late bloomers (myself and husband) so not expecting puberty till she is 15 or 16. She recently has some acne, beginnings of puberty, I wonder if her acne would be much worse but since she is on azith I think that definately helps reduce it. I forgot to mention dialated pupils, my dd had this from age 9 to 11 then again at age 12 before ivig. IVIG got rid of it, have not seen it for years. Just a mothers gut instinct, but the dialated pupils for me is an indicator of a current attack going on. I saw it for years so did my father, a physician, actually he is the one who pointed it out to me. After my dd's first serious attack at age 9, about 6 months post I was pleased with my dd's progress on pencillin vk and said to my father, "doesn't she look good" he responsed "no its like she is in a trance and looks right through all of us" , that was my first awareness of her dialated pupils. I can tell you Latimer looks for that, its like they are in a trance. JAG what are your plans next for your dd?

Link to comment
Share on other sites

Jag

 

My dd is still trying to get through puberty has a year to go, we are late bloomers (myself and husband) so not expecting puberty till she is 15 or 16. She recently has some acne, beginnings of puberty, I wonder if her acne would be much worse but since she is on azith I think that definately helps reduce it. I forgot to mention dialated pupils, my dd had this from age 9 to 11 then again at age 12 before ivig. IVIG got rid of it, have not seen it for years. Just a mothers gut instinct, but the dialated pupils for me is an indicator of a current attack going on. I saw it for years so did my father, a physician, actually he is the one who pointed it out to me. After my dd's first serious attack at age 9, about 6 months post I was pleased with my dd's progress on pencillin vk and said to my father, "doesn't she look good" he responsed "no its like she is in a trance and looks right through all of us" , that was my first awareness of her dialated pupils. I can tell you Latimer looks for that, its like they are in a trance. JAG what are your plans next for your dd?

 

What I wouldn't give to see those beautiful, hazel eyes again and not all blacked out! We're taking her to see Dr. B a week from Monday, but her labs already came back; low IgG (720), low IgA (46), high C3D (27), failed all the s. pneum serotypes. All the Celiac tests were fine, Gliadin-fine, Vit D-fine, IgeneX not back yet. We can't keep paying out of pocket for everything, gotta get some coverage!!! I work for a school district; I'm supposed to have one of those Cadelac plans for crying out loud!!!!

Link to comment
Share on other sites

My kids are 4.5 and 7. The 7 year old had PANDAS for at least a couple of years, mildly and intermittently, before the chronic infection that led us to find out he was deficient and needed IVIG. We had noticed PANDAS in my 4 year old, again mildly, only a few months before he got IVIG, and around the time we started to test for immune deficiency...but he had been sick with recurrent/chronic sinus stuff ever since he was a baby. Anyway, neither had had a very long or very deep history with PANDAS before we started IVIG, and we didn't start IVIG for PANDAS, but rather because they had chronic infections and immune deficiencies. They get IVIG every 21-28 days - the schedule is really 21 days and that's ideal, but sometimes for scheduling reasons we have to stretch it out a few extra days. Their immunologist does take blood for monitoring periodically, but I don't actually know the numbers or exactly what target he's after. He seems to be going more by their clinical state. If they're doing well, we continue as is; if something comes up, we tinker.

 

Ds4 is expected to need IVIG indefinitely due to CVID. I still hope that some day he will grow out of it since he is so young, but with his numbers, I guess the stats aren't promising. We were hoping that ds7 would be done with the treatments by now since his deficiency is not as bad as his brother's, but we tried to extend the interval between his treatments last month and he got a sinus infection before the 28-day mark that wouldn't go away, so we had to start up again so that he could clear it. Based on that, I think still needs it, too.

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...