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IVIG for Immune Deficiency


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My daughter is in her third severe exacerbation. She has an immune deficiency also, which was initially found in October 2010. That led us to IVIG; she's had 7 HD IVIG; after a break since June 2011, the most recent one was last week.

 

Her levels dropped lower than they were in October 2010 when tested again recently, so we're back to HD IVIG as we work to stabilize her and also clear the endless strep infections... again. :wacko:

 

Our local Immuno is suggesting and I anticipate we may have to go to long term low dose once she is stable, but I'm not sure it is advisable to do the low dose (even after stable on high dose)... I need more input on that one and will be discussing with other members of her medical team.

 

Does anyone else have an immune deficiency in the mix and if so, how are you handling it? Is it working? Has anyone successfully done LD IVIG once their child is stable on HD IVIG?

 

TIA!

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Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

My daughter is in her third severe exacerbation. She has an immune deficiency also, which was initially found in October 2010. That led us to IVIG; she's had 7 HD IVIG; after a break since June 2011, the most recent one was last week.

 

Her levels dropped lower than they were in October 2010 when tested again recently, so we're back to HD IVIG as we work to stabilize her and also clear the endless strep infections... again. :wacko:

 

Our local Immuno is suggesting and I anticipate we may have to go to long term low dose once she is stable, but I'm not sure it is advisable to do the low dose (even after stable on high dose)... I need more input on that one and will be discussing with other members of her medical team.

 

Does anyone else have an immune deficiency in the mix and if so, how are you handling it? Is it working? Has anyone successfully done LD IVIG once their child is stable on HD IVIG?

 

TIA!

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My dd was dx'd with Pandas in 5/09. A month later she was dx'd with Selective Antibody Deficiency (I think we were one of the 1st families on this forum to go down this route). She had high dose IVIG following Dr. K's protocal in 7/09. Three weeks later she started low dose IVIG in an amount that is consistant with treating the Immune Deficiency. She has continued monthly IVIG ever since.

 

We saw some initial improvements after the first HD IVIG and every month following we continuted to see new improvements. She does/can have a hard two days following IVIG but we have found that if they pump the medicince very slowly she does much better. by a hard time I mean a headache, fever, and fatigue. If we can get her to drink a lot of water all of these sx's are minimal and very managable.

 

She continued to do extremely well on the monthly IVIG until 11/10. So much so that we really thought Pandas was a thing of the past. Somehow she picked up a Pseudomonas infection that was hiding in her tonsils and she continued to spiral downward until her tonsils were removed in 7/11. During this time period, her Immunologist bumped her IVIG up but it did not help. This was actually her second Pseudomonas infection (in her bladder the first time) and as with the first time-she had a lot of the same sx's as with the Pandas. Once her tonsils were removed, she started to improve immediately and within a few weeks returned to where she was at prior to the new infection.

 

She has been on monthly IVIG for almost three years. I can tell you in all honesty that as a family we have felt very blessed that she has been able to receive this. It has been a miracle in her life. She actually "looks forward" to her next treatment (as much as a kid can when they are getting poked with a needle!) because she knows how much better she feels afterwards. We can see a definite change in her mood, energy level, and overall outlook immediately following her treatment. She is a different kid! Just today she asked when her next IVIG was scheduled and I assume that her fatigue and leg pain must be returning.

 

I do have to tell you that her ASO titers have never fallen below 500 during the last three years. Also, last year my dd, myself and my son were all dx'd with Lyme disease and Co. My dd has not missed any school this year due to illness. She does have some Pandas like mood issues (very minor) about every 21 days but we attribute that to herxing from the lyme meds. I'm hopeful that once we start treating the biofilms we will see her ASO titers finally come down to within a normal range.

Edited by ShaesMom
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Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

 

Ellen, does you son still have his tonsils?

 

Also, have they checked his Toxoplasmosis titers?

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EAMom, yes my son still has his tonsils. His strep titers have never been more than a little elevated and they are currently not elevated at all, so I'm not sure if removing tonsils would make a difference in his case. When we were doing lyme treatment, his LLMD checked for Toxoplasmosis and he was IGG but not IGM positive. But no treatment for this was ever suggested. We are open to any and all suggestions, so if you or anyone else has any ideas please PM me. So far we are not seeing any obvious improvements on Clozaril.

 

Ellen

 

 

Denise, I recently had a consult with my son's DAN doctor, and we spoke about high dose vs. low dose IVIG for PANDAS kids with immune deficiencies. She has talked with several immunologists who treat PANDAS, and they are split on this issue. A couple months ago, I posted an update on my son, who had a severe setback last spring and is now dealing with not just OCD as the primary symptom but major delusions, hallucinations, and paranoia. In October he reached a point where he could no longer function at home, and we had to hospitalize him. In January he was transferred to a different hospital, which has a school on the premises and is more set up for a long term stay, and he has been on Clozaril for the schizophrenic symptoms since early December. We have been told that this medication can take up to six months to work, and we are trying to come up with a plan for IVIG if the Clozaril does not help or if it doesn't help enough. My son has had four high dose IVIGs over the past couple of years and only the first one was helpful. He has significant immune deficiencies (low IGG, low IGA, and low IGM), and his DAN is in agreement with those immunologists who feel that low dose monthly IVIG is better for PANDAS kids who are also immune deficient and that high dose IVIG can sometimes exacerbate symptoms for kids with these deficiencies. A few of the immunologists she has spoken to strongly disagree with this position, but my husband and are willing to try low dose monthly IVIG at some point after our son becomes stable enough to go for these treatments, since the last high dose IVIG he had did not help at all with the schizophrenic symptoms or anything else; it only made him worse. His DAN did say that if he responds well to the low dose, then we could gradually build to higher doses in time. I know that every kid is different in how they respond to IVIG, but if you are finding that high dose is no longer working for her, it might be worthwhile to try it this way. I would also be really interested in finding out from others on the forum if low dose monthly IVIG has been helpful for immune deficient kids and if so, how long it takes to start to see improvements.

 

Ellen

 

 

Ellen, does you son still have his tonsils?

 

Also, have they checked his Toxoplasmosis titers?

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My son is 28 diagnosed w PANDAS at age 14. HD IVIG at age 16 caused severe allergic reaction on first day so no second day dose given. No preop meds given for first day. Second HD IVIG given 2010 went well and started to see slight improvement. After 4 weeks developed Severe mono which he already had a case of at age 15. has at least 40 ear, strep and sinus infections from age one. Strep pneumoniae bloodwk done in Mar 2010 showed no protection at all. In May 2011 saw immunologist who gave him pneumovax inj. A month later he had full strep protection protection. 3 months later strep protection down by 50%. Diagnosed w Specific antibody deficiency to strep pneumoniae in Oct 2011. Started on LD IVIG Nov 2011 monthly at Stanford adult infusion CTR.Helped clear up all staph boils and 40 warts, but has done nothing for PANDAS -OCD and Tourette's both severe. Yesterday met with nurse educator for infusion CTR and her passion is immune deficiencies. She said that rather than giving LD IVIG monthly giving it subcutaneous under the abdominal skin keeps the IVIG at a more even level throughout the month. It can begone at an infusion center or at home with the parent or patient learning to do the one hour weekly procedure on their own. I have yet to find a doctor who will give HD IVIG and my question is will HD IVIG help the immune def and PANDAS at the same time. Go to Immune deficiency.org and there are many tools for clinicians and patients plus a conference which will be held in Baltimore in Jun 2013. I am concerned because isome immunologists seemed interested in treating immune def, but not PANDAS. So do I need to find another doctor to treat the PANDAS. It was a very enlightening day for me.

Edited by Bordercollie
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Low dose vs high dose and frequency have an impact. Very complicated and one persons low dose may be anothers high dose so I would clarify what dosage u r referring to. My dd had low dose (600 mg per kg) every 4 weeks for a year, she has hypogammaglobinea, low igg, low igm. Plus she has many autoantibodies. (ANA, antidopamine, and an extremely low c4. She is treating by one of the leading autoimmune disease specialist in the country and heads our bone marrow transplant center. Our doc has treated thousands of children with serious autoimmune disease with chemo, monoclonal antibody drugs, and ivig. The low dose didn't help with pandas too much but we did not see a lot of improvement until we switched to every 21 days and 1 gram per kilogram. We titered up the dose so she could adjust to the increase slowly over 6 months. My dd had a large inflammatory response to ivig and this did not help her pandas so we had to ramp up slowly. Low dose ivig (under 1 gram per month), is not found to help autoimmune disease, so not sure why ur docs would feel this would be better. Of course if ur child is reacting to the high dose what other choice do u have. I would maybe consider a medium dose with increased frequency to maintain stability and to snuff out the autoantibodies. Works well with other autoimmune disease. Is protocol of choice at our bone marrow transplant center, and balances ivig side effect with disease reoccurance. Oh and sub q infusions do nothing for autoimmune disease and should not be considered unless u just want to treat the immune def.

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Oh and if ur docs measure trough levels please post them, autoimmune disease is best treated with ivig when trough levels are maintained AT ALL TIMES, above 2000. Its a good way to determine dose and frequency by using this marker. So if ur childs troughs are below 2000, this maybe why the ivig is not working on autoimmune disease. People consume ivig at different rates, my dd's troughs go from 3200 to about 1900 between the 21 day infusions. When she was every 28 days it went from 2200 to 800. Huge difference. Half life of ivig is 21 days.

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My daughter is in her third severe exacerbation. She has an immune deficiency also, which was initially found in October 2010. That led us to IVIG; she's had 7 HD IVIG; after a break since June 2011, the most recent one was last week.

 

Her levels dropped lower than they were in October 2010 when tested again recently, so we're back to HD IVIG as we work to stabilize her and also clear the endless strep infections... again. :wacko:

 

Our local Immuno is suggesting and I anticipate we may have to go to long term low dose once she is stable, but I'm not sure it is advisable to do the low dose (even after stable on high dose)... I need more input on that one and will be discussing with other members of her medical team.

 

Does anyone else have an immune deficiency in the mix and if so, how are you handling it? Is it working? Has anyone successfully done LD IVIG once their child is stable on HD IVIG?

 

TIA!

 

 

Melanie's DS has immune deficiency, and I know they have been doing LD. You might want to PM her.

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Hi

 

Danny gets .60 grams IVIG every 21 days as a matter of fact we have an infussion tonight .He weighs about 145 skinny guy) Hes been getting them for over 2 years .He definitly starts acting a little more off right before the next infussion.His immunologist would bumkp it to every 2 weeks if i would allow it.I never did high dose always have done the same .60 grams.His Neuro and Immuno say the same thing,same dosage.He did have 5 plasma exchanges in Nov and were probably going to do it again in the summer.

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My son gets 30 gms every 4 weeks and he weighs 160 pounds. So with input from you all I need to see if his doctor will make some changes. maybe he will go to a 21 day cycle and slowly increase his dose so he will get 1 gram per kilogram. I am a nurse and over time I would not mind if we could do it at home with another nurse here to watch him. Thank you everyone for all your help. I will let you know how our appt with the immunologist goes 19 Mar.

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Bordercollie: I'm also an RN and we've been doing them at home with another RN present. I don't tend to interfere much in the infusions, but I do watch to be sure she is getting the correct dosage, rates, b/p's remain stable, etc.

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