Joan Pandas Mom Posted February 26, 2010 Author Report Share Posted February 26, 2010 For those who have had IVIG's would you highly recommend it for others considering it? Thank you for your input. This is really helpful. Link to comment Share on other sites More sharing options...
laurenjohnsonsmom Posted February 26, 2010 Report Share Posted February 26, 2010 Without a doubt..absolutley! (1.5g/k or 2g/k over two days as I don't think you get the same good results at a lower dose). For those who have had IVIG's would you highly recommend it for others considering it? Link to comment Share on other sites More sharing options...
ShaesMom Posted February 26, 2010 Report Share Posted February 26, 2010 For those who have had IVIG's would you highly recommend it for others considering it? Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I'm sorry Alex but I have to respectly disagree with you and the Doctor's who state that monthly IVIG is not the right way to go. My daughter has been receiving monthly IVIG since last July (2gm/kg over 2 days in July and now 1gm every 4 weeks) and currently she has absolutely no signs of Pandas. It took 4-6 months before all symptoms were gone but she is doing amazingly well at this point. Her brother tested positive for strep this morning and has been coughing on all of us this last week and I haven't seen any flare in her Pandas. In the past, she would react immediately if she was around anyone with strep. IMO-the monthly dose of Ivig has actually allowed her body to heal and stopped the autoimmune reaction. Link to comment Share on other sites More sharing options...
Ellen Posted February 26, 2010 Report Share Posted February 26, 2010 ShaesMom, I'm glad to hear that your daughter is doing so well. I am curious to know how long after her two gm./kg. dose over two days did she begin the monthly IVIG. Was it a month later or longer? At what point in time did you begin to see results? Ellen For those who have had IVIG's would you highly recommend it for others considering it? Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I'm sorry Alex but I have to respectly disagree with you and the Doctor's who state that monthly IVIG is not the right way to go. My daughter has been receiving monthly IVIG since last July (2gm/kg over 2 days in July and now 1gm every 4 weeks) and currently she has absolutely no signs of Pandas. It took 4-6 months before all symptoms were gone but she is doing amazingly well at this point. Her brother tested positive for strep this morning and has been coughing on all of us this last week and I haven't seen any flare in her Pandas. In the past, she would react immediately if she was around anyone with strep. IMO-the monthly dose of Ivig has actually allowed her body to heal and stopped the autoimmune reaction. Link to comment Share on other sites More sharing options...
melanie Posted February 27, 2010 Report Share Posted February 27, 2010 For those who have had IVIG's would you highly recommend it for others considering it? Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I'm sorry Alex but I have to respectly disagree with you and the Doctor's who state that monthly IVIG is not the right way to go. My daughter has been receiving monthly IVIG since last July (2gm/kg over 2 days in July and now 1gm every 4 weeks) and currently she has absolutely no signs of Pandas. It took 4-6 months before all symptoms were gone but she is doing amazingly well at this point. Her brother tested positive for strep this morning and has been coughing on all of us this last week and I haven't seen any flare in her Pandas. In the past, she would react immediately if she was around anyone with strep. IMO-the monthly dose of Ivig has actually allowed her body to heal and stopped the autoimmune reaction. Im glad to hear things are going well I really want to know when you started to see the real change with the monthly ivs ? Melanie Link to comment Share on other sites More sharing options...
ShaesMom Posted February 27, 2010 Report Share Posted February 27, 2010 ShaesMom, I'm glad to hear that your daughter is doing so well. I am curious to know how long after her two gm./kg. dose over two days did she begin the monthly IVIG. Was it a month later or longer? At what point in time did you begin to see results? Ellen [ She had her second Ivig three weeks afters the large two day dose and then every four weeks since. Melanie-we saw results following the first dose and then each month after another treatment we would notice that something else seemed to be improved. I'd have to look at my previous posts for the exact order of which came when and how soon (over 40 and the memory is going LOL). If I remember correctly alot of the anxiety seemed to disappear quickly. School started exactly one month after the first treatment and she was able to return without any of the dibilitating separation anxiety she had experienced the year before. She did continue to have difficulty eating lunch (only would eat about 5-6 crackers) but that disappeared after the treatment in September. The raging was the last to go-took about 5 treatments. Link to comment Share on other sites More sharing options...
Ellen Posted February 27, 2010 Report Share Posted February 27, 2010 ShaesMom, did she begin the monthly IVIG three weeks or three months after the large two day dose? Ellen ShaesMom, I'm glad to hear that your daughter is doing so well. I am curious to know how long after her two gm./kg. dose over two days did she begin the monthly IVIG. Was it a month later or longer? At what point in time did you begin to see results? Ellen [ She had her second Ivig three afters the large two day dose and then every four weeks since. Melanie-we saw results following the first dose and then each month after another treatment we would notice that something else seemed to be improved. I'd have to look at my previous posts for the exact order of which came when and how soon (over 40 and the memory is going LOL). If I remember correctly alot of the anxiety seemed to disappear quickly. School started exactly one month after the first treatment and she was able to return without any of the dibilitating separation anxiety she had experienced the year before. She did continue to have difficulty eating lunch (only would eat about 5-6 crackers) but that disappeared after the treatment in September. The raging was the last to go-took about 5 treatments. Link to comment Share on other sites More sharing options...
ShaesMom Posted February 27, 2010 Report Share Posted February 27, 2010 Oops! Three weeks after. ShaesMom, did she begin the monthly IVIG three weeks or three months after the large two day dose? Ellen ShaesMom, I'm glad to hear that your daughter is doing so well. I am curious to know how long after her two gm./kg. dose over two days did she begin the monthly IVIG. Was it a month later or longer? At what point in time did you begin to see results? Ellen [ She had her second Ivig three weeks afters the large two day dose and then every four weeks since. Melanie-we saw results following the first dose and then each month after another treatment we would notice that something else seemed to be improved. I'd have to look at my previous posts for the exact order of which came when and how soon (over 40 and the memory is going LOL). If I remember correctly alot of the anxiety seemed to disappear quickly. School started exactly one month after the first treatment and she was able to return without any of the dibilitating separation anxiety she had experienced the year before. She did continue to have difficulty eating lunch (only would eat about 5-6 crackers) but that disappeared after the treatment in September. The raging was the last to go-took about 5 treatments. Link to comment Share on other sites More sharing options...
nevergiveup Posted February 27, 2010 Report Share Posted February 27, 2010 Melanie, What dosage did Danny get the first time, I believe it was this past summer when he was in the hospital? Shaes mom, I couldn't tell from your response was it three weeks post or three months post the original dose did your dd start receiving the monnthly lower dose ivig? Also what brand of ivig does she receive? Does she have any small set back after doses, like one or two days of panda symptoms? Danny does have a immune defiency,What if you have both PANDAS and ID? Sorry Imsuch a pain Melanie Link to comment Share on other sites More sharing options...
CandKRich Posted February 27, 2010 Report Share Posted February 27, 2010 (edited) . Edited August 12, 2013 by CandKRich Link to comment Share on other sites More sharing options...
dabel Posted February 27, 2010 Report Share Posted February 27, 2010 I would definately recommend IVIG. My son is 12 1/2 and had it done with Dr.K about three months ago. The change has been amazing! I our case we basically did not have much choice and time was against us. The decision was made quite quickly and the benefits far out weighed the risk! Link to comment Share on other sites More sharing options...
michele Posted February 27, 2010 Report Share Posted February 27, 2010 Has anyone gotten their insurance to cover the IVIG with Dr. K? We have an Anthem PPO. We have messed around with PANDAS for so many years and I just think we need to get IVIG done and see what happens. I would definately recommend IVIG. My son is 12 1/2 and had it done with Dr.K about three months ago. The change has been amazing! I our case we basically did not have much choice and time was against us. The decision was made quite quickly and the benefits far out weighed the risk! Link to comment Share on other sites More sharing options...
sf_mom Posted February 27, 2010 Report Share Posted February 27, 2010 Yes, after we met deductable... but you pay cash up front and wait for reimbursement. Has anyone gotten their insurance to cover the IVIG with Dr. K? We have an Anthem PPO. We have messed around with PANDAS for so many years and I just think we need to get IVIG done and see what happens. I would definately recommend IVIG. My son is 12 1/2 and had it done with Dr.K about three months ago. The change has been amazing! I our case we basically did not have much choice and time was against us. The decision was made quite quickly and the benefits far out weighed the risk! Link to comment Share on other sites More sharing options...
CandKRich Posted February 27, 2010 Report Share Posted February 27, 2010 (edited) . Edited August 12, 2013 by CandKRich Link to comment Share on other sites More sharing options...
Fixit Posted February 27, 2010 Report Share Posted February 27, 2010 Does anyone have ling to Dr K site i must have deleted the link trying to clean up all my stuff..too much i called the office for the link on thursday and the lady they have there doesn't have it at that office....what? Link to comment Share on other sites More sharing options...
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