Kristy S Posted July 22, 2010 Report Share Posted July 22, 2010 (edited) Hi Everyone, My dd (Melanie age 8 now) has had PANDAS since Oct. 2008. She was diagnosed but had no treatment except for antibiotics (which does help a bit) but in general she is a mess. Our phone consult with Dr. K is next Wed, July 28th. We are in South Carolina so we will also have to travel. Do many of you have children who have needed IVIG several times? I'm just wondering if it would be better to go get a loan if they are all the same price. Are the odds good for 100% improvement after just 1 session? Things seem so hopeless now that it seems too good to be true. You know what I mean? Having a normal daughter seems impossible and brings me to tears every time I think of it. Please tell me some success stories. I seriously need some hope here and I am just really grateful I FINALLY found Dr. K, PANDAS Network and this forum. Any and all inspiration is welcome. I'm praying we can get IVIG before school starts so maybe this year will be okay. In SC it's unlikely they will ever hold her back even when she's not really learning anything. Thanks in advance to everyone, Kristy Edited July 22, 2010 by Kristy S Link to comment Share on other sites More sharing options...
momaine Posted July 22, 2010 Report Share Posted July 22, 2010 I don't know what the future will bring but our dd is 4 weeks post ivig and doing really well. I just hope it lasts. Angela Link to comment Share on other sites More sharing options...
peglem Posted July 22, 2010 Report Share Posted July 22, 2010 Welcome! This is a great place to be, if you need it. Sorry you need it! IVIG results seem to vary alot from person to person. I think you'll be in good hands w/ Dr.K. We've managed to get treatment locally here in Phoenix and my daughter gets IVIG every 4 weeks right now.(immune deficiencies also) She has had PANDAS probably from infancy and is nearly 16 years old. We only started IVIGs this year, but are seeing some pretty amazing results- ie..here: http://www.latitudes.org/forums/index.php?showtopic=9119&st=0&p=76029entry76029 Link to comment Share on other sites More sharing options...
LNN Posted July 22, 2010 Report Share Posted July 22, 2010 Kristy, Welcome to the forum. My son (who will be 8 in Sept) also got Pandas in the fall of '08. Last summer, we did plasmapheresis, which greatly helped with tic symptoms. Unfortunately, it did not prevent an exacerbation due to exposure in the winter. It wasn't a simple decision, but we finally decided to do IVIG 5 weeks ago. After 5 dark weeks, we are starting to feel the tide turning and seeing some really cool stuff (mostly in the last 2 days). But I won't be able to tell you if IVIG did the trick for at least a year. I don't know if IVIG is "the" trick. And please realize that not all kids who've had IVIG in this forum are dealing with "pure" pandas. Some found out after IVIG that their kids also had Lyme, likely impacting the efficacy of IVIG. A few have autism. Some have mycoplasma. Some were re-exposed to bacterial infections soon after IVIG. So you have to know the full story before you can just say whether IVIG "works". Each case has to be taken in context. Try not to get too worried when you read about mixed results. There's often more at work in any child. You just have to do your own research, make sure you know what's going on in your child (rule out lyme, mycoplasma, immune deficiencies), consider insurance and financial realities and then make an informed decision for Your child. If you haven't read them, there are some very helpful threads posted at the top of the page of the PANDAS forum page. You will find a Q&A, a treatment decision tree, some history, a list of doctors by geographical region... Also, don't get too discouraged about your daughter's school performance. I struggle with the same issue, but am always amazed during our all too brief remissions at how much my son really has absorbed but just can't show when he's sick. And I'm not the only one who has this experience. Again, welcome. Laura in CT Link to comment Share on other sites More sharing options...
tapiash Posted July 23, 2010 Report Share Posted July 23, 2010 Momaine How long did it take for you to see results? It has been a week and my son is so whiny and has lost all of the frustration tolerance he gained while he was on predisone. We are scheduled to have them every 28 days. Link to comment Share on other sites More sharing options...
pixiesdaddy Posted July 23, 2010 Report Share Posted July 23, 2010 I understand the desire for hope and positive news before having IVIG - we've been there. Our DD9 had IVIG last year. We saw immediate results (her tics and wetting issues went away) and some healing that occurred over a longer period of time (rage attacks and low frustration threshold greatly improved) that have sustained themselves for 12-months and through several mini-exacerbations post-IVIG. We cross our fingers every day that her healing will continue, but maybe it can offer some hope to you too. Pixiesdaddy Link to comment Share on other sites More sharing options...
lfran Posted July 23, 2010 Report Share Posted July 23, 2010 Greetings. So sorry you are here, but as others said, it is a good place to be if you need it. It sounds like you are paying cash for the IVIG. If so, have you had your daughter tested for immune deficiencies? If she is immune deficient, then I believe that insurance will pay for all or most of the IVIGs that are needed. Others can speak to that more. Link to comment Share on other sites More sharing options...
Kristy S Posted July 23, 2010 Author Report Share Posted July 23, 2010 She has not been tested for immune deficiencies.. Thank you for that tip, I will definitely have her tested! It would be really nice if insurance would help...especially if she needs more than one treatment. With the flights, hotel and treatment this is really adding up quickly..insurance coverage would really be a blessing. Link to comment Share on other sites More sharing options...
Buster Posted July 23, 2010 Report Share Posted July 23, 2010 Hi, The best blinded study is the original Perlmutter study in the 1999 Lancet, this was a small sample study but was blinded with placebo control : http://intramural.nimh.nih.gov/pdn/pubs/pub-5.pdf In terms of experience, Dr. K has somewhere around 100 cases of IVIG and has found >75% improvement in symptoms in 86% of cases when measured at 3 months. You should discuss with him or your doctor your specific case as there are items that make it more/less effective. In our case we had dramatic symptom resolution 3 weeks after IVIG which remained low for > 3 months. Best regards, Buster Hi Everyone, My dd (Melanie age 8 now) has had PANDAS since Oct. 2008. She was diagnosed but had no treatment except for antibiotics (which does help a bit) but in general she is a mess. Our phone consult with Dr. K is next Wed, July 28th. We are in South Carolina so we will also have to travel. Do many of you have children who have needed IVIG several times? I'm just wondering if it would be better to go get a loan if they are all the same price. Are the odds good for 100% improvement after just 1 session? Things seem so hopeless now that it seems too good to be true. You know what I mean? Having a normal daughter seems impossible and brings me to tears every time I think of it. Please tell me some success stories. I seriously need some hope here and I am just really grateful I FINALLY found Dr. K, PANDAS Network and this forum. Any and all inspiration is welcome. I'm praying we can get IVIG before school starts so maybe this year will be okay. In SC it's unlikely they will ever hold her back even when she's not really learning anything. Thanks in advance to everyone, Kristy Link to comment Share on other sites More sharing options...
momaine Posted July 24, 2010 Report Share Posted July 24, 2010 Momaine How long did it take for you to see results? It has been a week and my son is so whiny and has lost all of the frustration tolerance he gained while he was on predisone. We are scheduled to have them every 28 days. 3 weeks before I was sure. from 3-4 weeks she made great gains. But before the 3 week mark she was also less emotionally unbalanced. Hang in there. Angela Link to comment Share on other sites More sharing options...
momaine Posted July 24, 2010 Report Share Posted July 24, 2010 Momaine How long did it take for you to see results? It has been a week and my son is so whiny and has lost all of the frustration tolerance he gained while he was on predisone. We are scheduled to have them every 28 days. Did you do a high dose, at least 1.5g per kg? Link to comment Share on other sites More sharing options...
KaraM Posted July 24, 2010 Report Share Posted July 24, 2010 In SC it's unlikely they will ever hold her back even when she's not really learning anything. I can't comment on the IVIG, since we've only been doing abx. But you may be surprised at how much she has actually taken in, but just can't show in any way right now. My then 7 now 8 year old daughter, who has always done well at math, started struggling (not a lot, but clearly was not grasping things as easily as pre-PANDAS). But as she's been recovering, she is better able to show what she knows. She had plateaud in reading as well and jumped a couple of levels after starting abx. I've heard similar comments from other parents, too. For example, children who were struggling to learn to read in K/1 during exacerbation make huge leaps once PANDAS starts to come under control. Hang in there... Kara Link to comment Share on other sites More sharing options...
tapiash Posted July 24, 2010 Report Share Posted July 24, 2010 Momaine How long did it take for you to see results? It has been a week and my son is so whiny and has lost all of the frustration tolerance he gained while he was on predisone. We are scheduled to have them every 28 days. Did you do a high dose, at least 1.5g per kg? We had 2g Link to comment Share on other sites More sharing options...
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