IVIG help

[kimballot]

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

[momaine]

Maybe you could have the immunologist consult with Dr. K so that he recieves a dose that will help with all the probelms.

Angela

 

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

[mama2alex]

We have some experience with this, so I'll tell you what I know. If you are considering the Pneumovax, you should get his s. pneumonae titers checked first. Here's why: If you check the titers and they are all within acceptable range, then you don't need the vaccine in the first place. If you check them and some are low, and then you decide to get the vax, you can recheck them a few weeks after the vax and see if he mounted a response. If he doesn't, then this may be diagnosed as "Specific Antibody Deficiency" which may qualify him for monthly IVIGs.

 

The optimal route would be if the immunologist would give him IVIG for low IGGs, but make the first dose a higher dose to treat PANDAS (Dr. K does 1.5 mg/kg and Swedo did 2mg/kg of body weight). We started out with 2mg/kg for our 9yo and he is doing much better 13 weeks post IVIG. He was initially diagnosed with Specific Antibody Deficiency, and the plan was to give him the high dose the first time, then lower monthly doses for the immune deficiency. However, in our case, they discovered they'd misread the lab results after his first IVIG, so we never had the monthly follow-ups.

 

So to answer your questions:

1. No, I think the monthly IVIG's for immune deficiency are a lower dosage than is used to successfully treat PANDAS. So you'd want to ask (beg?!) to do at least 1.5 mg/k the first time. We got lucky and our immunologist agreed to this. I don't have any idea how he coded it for the insurance company, but it was preapproved. I have not gotten notice that it's been paid yet, but was assured by the financial department at the hospital that if they pre-approve, they will pay.

 

2. Our son had the full course of Prevnar shots when he was little (4 I believe). These are different than Pneumovax - Prevnar is for babies and young children and only contains 7 serotypes of the bacteria. Pneumovax is for older children (when needed) and adults. It should only be given once every 5 years, as I understand it. It contains 23 serotypes of the bacteria. We made the VERY difficult decision of giving our son the Pneumovax vaccine last fall, to test for Specific Antibody Deficiency. He's had pneumonia 6 times and has been hospitalized with it twice, so pneumonia is a big concern for us, but still it wasn't an easy decision. He was not doing well (in terms of PaNDAS) at the time, but we did not seem him get significantly worse after the vaccine. But I know of PANDAS kids who've had terrible reactions to Pneumovax, so it felt a bit like Russian Roulette. In the end, you'll have to weigh all the risks and potential benefits, and make a decision. But this is why you should start by checking his titers - no use risking the vaccine if he doesn't need it!

 

3. If the immunologist recommends IVIG for immune deficiency, you should be able to get it covered by insurance. I believe most, if not all, insurnace companies won't cover it for PANDAS. So if you do IVIG and start with the higher "PANDAS" dosage, I'm not sure how to get that covered. Our doctor was able to, but I don't know exactly how he coded it.

 

Hope all that is helpful!! One last thought: Have you looked into whether there is a PANDAS knowledgeable immunologist anywhere near you? That would be your best bet.

 

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

[melanie]

We have some experience with this, so I'll tell you what I know. If you are considering the Pneumovax, you should get his s. pneumonae titers checked first. Here's why: If you check the titers and they are all within acceptable range, then you don't need the vaccine in the first place. If you check them and some are low, and then you decide to get the vax, you can recheck them a few weeks after the vax and see if he mounted a response. If he doesn't, then this may be diagnosed as "Specific Antibody Deficiency" which may qualify him for monthly IVIGs.

 

The optimal route would be if the immunologist would give him IVIG for low IGGs, but make the first dose a higher dose to treat PANDAS (Dr. K does 1.5 mg/kg and Swedo did 2mg/kg of body weight). We started out with 2mg/kg for our 9yo and he is doing much better 13 weeks post IVIG. He was initially diagnosed with Specific Antibody Deficiency, and the plan was to give him the high dose the first time, then lower monthly doses for the immune deficiency. However, in our case, they discovered they'd misread the lab results after his first IVIG, so we never had the monthly follow-ups.

 

So to answer your questions:

1. No, I think the monthly IVIG's for immune deficiency are a lower dosage than is used to successfully treat PANDAS. So you'd want to ask (beg?!) to do at least 1.5 mg/k the first time. We got lucky and our immunologist agreed to this. I don't have any idea how he coded it for the insurance company, but it was preapproved. I have not gotten notice that it's been paid yet, but was assured by the financial department at the hospital that if they pre-approve, they will pay.

 

2. Our son had the full course of Prevnar shots when he was little (4 I believe). These are different than Pneumovax - Prevnar is for babies and young children and only contains 7 serotypes of the bacteria. Pneumovax is for older children (when needed) and adults. It should only be given once every 5 years, as I understand it. It contains 23 serotypes of the bacteria. We made the VERY difficult decision of giving our son the Pneumovax vaccine last fall, to test for Specific Antibody Deficiency. He's had pneumonia 6 times and has been hospitalized with it twice, so pneumonia is a big concern for us, but still it wasn't an easy decision. He was not doing well (in terms of PaNDAS) at the time, but we did not seem him get significantly worse after the vaccine. But I know of PANDAS kids who've had terrible reactions to Pneumovax, so it felt a bit like Russian Roulette. In the end, you'll have to weigh all the risks and potential benefits, and make a decision. But this is why you should start by checking his titers - no use risking the vaccine if he doesn't need it!

 

3. If the immunologist recommends IVIG for immune deficiency, you should be able to get it covered by insurance. I believe most, if not all, insurnace companies won't cover it for PANDAS. So if you do IVIG and start with the higher "PANDAS" dosage, I'm not sure how to get that covered. Our doctor was able to, but I don't know exactly how he coded it.

 

Hope all that is helpful!! One last thought: Have you looked into whether there is a PANDAS knowledgeable immunologist anywhere near you? That would be your best bet.

 

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

 

 

My son does monthly iVs and does 1g every 21 days due to Immune defiency.Hes doing great today some days are good and some arent.Hes 15 and we have been using the IV for 3 months.

Melanie

[ShaesMom]

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

 

My daughter has been dx'd with an immune deficiency disease in addition to the Pandas. You can learn a lot about PIDD's at the following websites: www.primaryimmune.org Click on the publications link and then Patient and Family Handbook. Chapters 1, 2 & 10 are a good place to start. Also www.jmfworld.com This site has a page where you can find a local doctor who specializes in immune deficiencies and another that gives you a four step breakdown of what tests should be done for immune deficiencies. We have a great Immunologist in Nebraska who told me that it is important to find someone who is a CLINICAL immunologist who looks at the immune system as a whole functioning together whether than a separate doc for allergies, another one for the immune issues, and yet another for the asthma.

 

If your child is dx'd with an immune deficiency insurance should cover the IVIG. My daughter received 2 grams of IVIG over two days for her Pandas (this amount is consistant with other autoimmune illnesses) and now receives a smaller dose every four weeks for the PIDD. BCBS has paid for everything so far.

 

PM me if you have questions.

[kimballot]

Thank you SO much to everyone who has shared so far. This is so very helpful. If anyone else has suggestions or experience to share, I would love to hear it! Thanks

[nevergiveup]

I have pretty strong opinions in this area, as many others on the forum already know. But I will not sugar coat it for you as some already have. First, 795 IGG is not an immune deficiency. You would be lucky to qualify for an immune def at 500. So the immune doc will test the quality of your immune cells and examine the ability to fight infection rather than the number of immune cells. (IGG Level) This is when they will run titers on HIB, DTP Pnemonccocal IGG levels. If your child fails to have have titers to the pnemovax that was originally given twice, then yes your child has an immune def, Do not let them revax, as in the case of. Alex's MOM she had a response to the vaccine, 90 percentt do and then your child is then dismissed. I am not sure her son would have received the two grams ivig had the doctor read her kids chart right. She will need to confirm this, I am just assuming. (The big question is how long does the child maintain the titers response) This vaccine is a test to see if your child mounts a response, checking the quality of his immune cells. It is not offerring any more protection. So if he already failed the vaccine as a child do not vaccinate again, your child could have a relapse in PANDAS, some are very severe. Do not let the doc tell you the vaccine will not hurt him unless you are talking with a PANDAS expert. Two vaccines already should be good enough to determine if your child has an immuned def. Be very careful going down this path, I would have Dr. BouBoulis consult, he is an immunologist and a Pandas doc and can help give you direction. Give him a call. Also have you run the Cunningham tests immunologists like this test to show autoantibodies which are seen frequently with immine def's.

 

te name='kimballot' date='Mar 17 2010, 11:43 PM' post='60454']

I just took my 13 yo PANDAS son to the ENT and he was dx with sinus infection (story of his life - literally)... He also recently tested positive for strep (DNASE-B AB480) and mycoplasma (>5.0 detected; with >1.1 being positive), and had low IGG (795, with the norm range of 893-1823 noted) on last immune status panel in early Feb. Dr. T (my hero) recently started him on Biaxin for the strep and mycoP. The ENT took a look today and said he is truly getting over a sinus infection and he should see a local immunologist for possible pneumovax booster (he had one at 2 years old and one at 4 years old, so this would be his third pneumovax) and/or IVIG. Of course my ears perked up when I heard IVIG and I asked her if she has seen other people with numbers like my son receive IVIG and she indicated that she thought it might be a possibility - depending on the immunologist....

 

So.. I am looking for advice before I make an appt. with the local pediatric immunology group. My questions are: 1. If the immunologist recommends IVIG for his immune problem - is that the same IVIG that he would receive for PANDAS, or is that something different. .. and 2. What are people's experiences with repeated pneumovax shots. He never had any negative reactions to the two previous pneumovax shots, but he was young then and it may have been harder to figure out. 3. Does anyone have any advice on getting IVIG covered via insurance if it turns out that they recommend IVIG at a dose other than what would be recommended for PANDAs.

 

 

I will check posts, and PMs are also welcome if you prefer.. Thanks so much - looking forward to learning from your experiences...

[kimballot]

I have pretty strong opinions in this area, as many others on the forum already know. But I will not sugar coat it for you as some already have. First, 795 IGG is not an immune deficiency. You would be lucky to qualify for an immune def at 500. So the immune doc will test the quality of your immune cells and examine the ability to fight infection rather than the number of immune cells. (IGG Level) This is when they will run titers on HIB, DTP Pnemonccocal IGG levels. If your child fails to have have titers to the pnemovax that was originally given twice, then yes your child has an immune def, Do not let them revax, as in the case of. Alex's MOM she had a response to the vaccine, 90 percentt do and then your child is then dismissed. I am not sure her son would have received the two grams ivig had the doctor read her kids chart right. She will need to confirm this, I am just assuming. (The big question is how long does the child maintain the titers response) This vaccine is a test to see if your child mounts a response, checking the quality of his immune cells. It is not offerring any more protection. So if he already failed the vaccine as a child do not vaccinate again, your child could have a relapse in PANDAS, some are very severe. Do not let the doc tell you the vaccine will not hurt him unless you are talking with a PANDAS expert. Two vaccines already should be good enough to determine if your child has an immuned def. Be very careful going down this path, I would have Dr. BouBoulis consult, he is an immunologist and a Pandas doc and can help give you direction. Give him a call. Also have you run the Cunningham tests immunologists like this test to show autoantibodies which are seen frequently with immine def's.

_______________________________________________________________

 

Thank you so much for your honest response. This is very helpful. I know his levels are not very low and was surprised when the ENT indicated that she has had kids receive IVIG at this level. Dr. B is a good idea. Thanks

Edited March 19, 2010 by kimballot