FallingApart Posted July 21, 2009 Report Share Posted July 21, 2009 Hello again, I feel like I am asking so many questions and I am sorry to clog the board. I hope these questions are helpful to other people as well. My question from yesterday spurred this one. At what point can the IVIG be done? My dd had a successful steroid burst and is doing well currently. Can we do a proactive IVIG so as not to lose the ground we have gained? Or do we have to wait for her to regress before we can do the IVIG? It seems there are varying understandings on this. I'm hoping my understanding is the incorrect one. My ped believed that we had to wait for DD to regress before we could do the IVIG. Can anyone share their thoughts or stories? Thanks so much! Kathleen Link to comment Share on other sites More sharing options...
ShaesMom Posted July 21, 2009 Report Share Posted July 21, 2009 Kathleen, Email Dr K or Diana. I don't believe your Ped has it right--I don't think your dd has to be in the middle of an exasperation. Sam Link to comment Share on other sites More sharing options...
T_Mom Posted July 21, 2009 Report Share Posted July 21, 2009 Please let us know what you find out--This is an important question for all of us along the way-- Thanks! Link to comment Share on other sites More sharing options...
NancyD Posted July 21, 2009 Report Share Posted July 21, 2009 We've been doing IVIG monthly since last August and have never heard this from any of our doctors. Nancy Link to comment Share on other sites More sharing options...
michele Posted July 21, 2009 Report Share Posted July 21, 2009 Diana, Your message box is full. Michele Kathleen, Email Dr K or Diana. I don't believe your Ped has it right--I don't think your dd has to be in the middle of an exasperation. Sam Link to comment Share on other sites More sharing options...
ShaesMom Posted July 21, 2009 Report Share Posted July 21, 2009 I emailed Diana and this was her reply "As far as Dr. K, Latimer and Swedo knows - it doesn't matter whatsoever. Dr. K has only pointed out that "it is, of course, EASIER TO SEE the transition to the positive" when the child is flipping out and then getting better." Sam Kathleen, Email Dr K or Diana. I don't believe your Ped has it right--I don't think your dd has to be in the middle of an exasperation. Sam Link to comment Share on other sites More sharing options...
ShaesMom Posted July 21, 2009 Report Share Posted July 21, 2009 Nancy, I'm curious why you do IVIG monthly? Does your child have an immune deficiency as well as Pandas? Sam Link to comment Share on other sites More sharing options...
NancyD Posted July 21, 2009 Report Share Posted July 21, 2009 Hi Sam, My daughter has one of the more severe cases of PANDAS our doctors have ever seen and they felt she would need at least a year of IVIG infusions. By the time she started IVIG at the age of 12 there was concern over whether the infusions would stick after puberty. Not to mention the fact that damage may have already been done to the basal ganglia after so many years without treatment. The first onset of symptoms came at the age of 3 but because she was already diagnosed with ASD her doctors at the time felt the symptoms were tied to ASD. Then, at the age of 6 she was misdiagnosed with bipolar and ADHD. None of the traditional meds helped. It was not until she was 7 and seeing a DAN doctor that she was diagnosed with PANDAS and immediately started treatment with antibiotics. That was when we realized all her non-ASD issues were tied to PANDAS and not bipolar, ADHD, TS, anxiety disorder, etc. Although 6 infusions of IVIG were recommended by our DAN doctor back then our insurance company would not cover it. I did not find an insurance company that would cover it until late last year when she was already 12 years of age and had reached puberty. After the third infusion we were forced to take a 3-month break until I could switch her insurance policy yet again to one that would cover IVIG for PANDAS without having to jump through hoops. Some of her symptoms returned about 60% so it was clear she had to restart the infusions. She has been pretty stable since the spring. She still has one minor tic and fairly moderate OCD, but she is very regulated now (no more violent rages) and sleeping through the night in her own bed. I did read somewhere on this forum that fish oil may aggravate tics so I am holding out her daily Omega 3 pills. Too soon to say if this is helping. We are also trying her on NAC for the OCD. Just the fact that we have come this far is amazing, but we may have to consider PEX down the road. Long answer to a short question... Nancy Nancy, I'm curious why you do IVIG monthly? Does your child have an immune deficiency as well as Pandas? Sam Link to comment Share on other sites More sharing options...
ShaesMom Posted July 21, 2009 Report Share Posted July 21, 2009 Nancy, I am so sorry for your family and your daughter that it took so long for her to be properly dx'd and then to get treatment. I sincerely hope that the IVIG helps her and that she doesn't have any remaining issues after a year. Thank God you found some doctors who were willing to treat her aggressively with the IVIG. Does she receive the recommended 1.5 grams/kg monthly or a smaller dose? Sam Link to comment Share on other sites More sharing options...
NancyD Posted July 21, 2009 Report Share Posted July 21, 2009 Thank you, Sam. It's been a very long and painful journey, to say the least. The ASD has been a cakewalk compared to the PANDAS. She is receiving 0.8 gm/kg. I asked about increasing the dosage but because her IGG levels were on the high side neither our DAN doctor or rheumatologist wanted to up the dosage. My guess is that once we stop the infusions the symtoms will come back over time (maybe not completely but by ~50%). I emailed Dr. K last year and he said it was his experience that effectiveness of IVIG would be difficult to predict in light of her age. But, even if we have to continue with the infusions for the rest of her life, it will be worth it compared to what we had before. She is a completely different person now. I am very interested in exploring the possibility of PEX down the road. I would love to talk with any parents who have gone through it for their children. How is Shae doing today? I'm so sorry she has had such awful side effects. Keep us posted. Nancy Nancy, I am so sorry for your family and your daughter that it took so long for her to be properly dx'd and then to get treatment. I sincerely hope that the IVIG helps her and that she doesn't have any remaining issues after a year. Thank God you found some doctors who were willing to treat her aggressively with the IVIG. Does she receive the recommended 1.5 grams/kg monthly or a smaller dose? Sam Link to comment Share on other sites More sharing options...
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