greeneyes48072 Posted March 24, 2009 Report Share Posted March 24, 2009 On top of everything with the tics, when I got home last night most of my son's eyelashes were gone. It seems I have passed my trich onto him. I think we're ready to check into the IVIG. Right now his symptoms are: verbal tics, motor tics, chorea arm/hand movements, fear of the dark/trouble sleeping alone, hyper activity and now eyelash pulling. For those of you that did the IVIG, what preliminary bloodwork/tests need to be done to see if there is anything that would make a child ineligible? And for those of you who did IVIG and your child had tics, how did the tics do after the IVIG? That you all so much!! Link to comment Share on other sites More sharing options...
bronxmom2 Posted March 24, 2009 Report Share Posted March 24, 2009 Hi greeneyes, We have not done IVIG so I don't have advice about that, but I just want to say... how awful! Do anything you have to do to help him! Link to comment Share on other sites More sharing options...
greeneyes48072 Posted March 24, 2009 Author Report Share Posted March 24, 2009 Thank you. Sure sounds like you have a lot to deal with right now too. I'm trying to move forward, but his father, my ex, is a road block right now... Link to comment Share on other sites More sharing options...
Worried_Dad Posted March 24, 2009 Report Share Posted March 24, 2009 Hi, greeneyes: Don't know what would make a child ineligible for IVIG. Dr. K just wanted to get titers and do the steroid burst to gauge how well IVIG might work for our son. Based on his case history and the dramatic improvement following steroid burst, he recommended IVIG. Our son (12, almost 13) is at the upper age range at which Dr. K has found IVIG to be effective. For the first month, we saw rapid improvement in symptoms. For the next month, slower improvement. Then things stagnated until a sinus infection in January caused a flare and he lost ground. While most symptoms have improved since pre-IVIG (even with the "mini-relapse" after sinus infection), tics were the one exception for our son. His motor tics have worsened a bit, and he actually developed a pretty major vocal tic about 2+ months post-IVIG. Weird, eh? Still glad we did IVIG. Things remain much better than before... but not as much progress as we had hoped. We're still frantically seeking a local doc who will help us arrange for a 2nd round of IVIG, per Dr. K's recommendation. Also pinged the pediatric neuro researcher who did our son's PET scan last year; he recommends 3-4 IVIG infusions for suspected PANDAS. Hope that helps. Best of luck! Link to comment Share on other sites More sharing options...
EAMom Posted March 24, 2009 Report Share Posted March 24, 2009 I think there is something about checking for IgA...if your child has low IgA there might be a reaction if you give an IVIG with high IgA. Worried Dad...did the neuro researcher rec. 3-4 IVIG infusions at the 1.5 (or 2) gm/kg dose? Or a lower dose? The immunologist we just saw is running a bunch of bloodwork to check for an immunodeficiency...that wouldn't make dd ineligible for IVIG but rather would give him something to put on the insurance form to justify IVIG if she turned out to be positive for something else. Link to comment Share on other sites More sharing options...
amy s Posted March 24, 2009 Report Share Posted March 24, 2009 On top of everything with the tics, when I got home last night most of my son's eyelashes were gone. It seems I have passed my trich onto him. I think we're ready to check into the IVIG. Right now his symptoms are: verbal tics, motor tics, chorea arm/hand movements, fear of the dark/trouble sleeping alone, hyper activity and now eyelash pulling. For those of you that did the IVIG, what preliminary bloodwork/tests need to be done to see if there is anything that would make a child ineligible? And for those of you who did IVIG and your child had tics, how did the tics do after the IVIG? That you all so much!! Nobody recommended this (except me), but my dd was tested for selective IgA deficiency because of what I had read about those with selective IgA deficiency having anaphylactic reaction to IVIg. But with a lot of things, the jury is still out whether or not the people who have it really do have anaphylaxis or not with IVIg. My dd did very well with IVIg and is now doing very good. She did not have tics though. She had severe OCD intrusive thoughts, tremors to include her upper body and head, OCD movements and severe skin picking. Out of those she still has mild hand tremors which she had before the pandas OCD explosion. Good luck to you. Link to comment Share on other sites More sharing options...
pmoreno Posted March 25, 2009 Report Share Posted March 25, 2009 On top of everything with the tics, when I got home last night most of my son's eyelashes were gone. It seems I have passed my trich onto him. I think we're ready to check into the IVIG. Right now his symptoms are: verbal tics, motor tics, chorea arm/hand movements, fear of the dark/trouble sleeping alone, hyper activity and now eyelash pulling. For those of you that did the IVIG, what preliminary bloodwork/tests need to be done to see if there is anything that would make a child ineligible? And for those of you who did IVIG and your child had tics, how did the tics do after the IVIG? That you all so much!! My daughter's tics are the one thing that did clear up with IVIG and she hasn't had them return (as yet) - I don't know what would happen with a brand new episode. Her ability to do school work has improved slightly - a little more able to concentrate for longer periods, but not what it should be. Her OCD remains with frequent questions that are irrelevant, but they're not as bad as a few months ago. Sleep is still a big issue, as well as emotional lability and separation anxiety. Things are manageable the way they are now and hope that they will improve. She does have an aid at school and for next year they are planning to have her in a special ed classroom. I'm resigning myself to that we're going to be stuck with this for a while at least at some level. As far as what specifically is improved with IVIG, I think varies with the kids. It probably depends on the receptor sites affected and which antibodies the IVIG will replace. Pat Link to comment Share on other sites More sharing options...
greeneyes48072 Posted March 25, 2009 Author Report Share Posted March 25, 2009 Thanks guys. I also read about the IgA deficiency problem, so I will be asking for that test. I also read how it puts a strain on the heart, lungs and kidneys so he should probably get a check up too. It is good to hear that some of you did see an improvement with the tics (Pat), as I was really worried. I saw the case study from back in '99 where the follow up showed no improvement with tics for the group that received IVIG. Wish me luck with getting his father on board. As of now he is still against it. I myself would do it today. I was hoping it wouldn't come to that, but he is not improving, we are at 16 weeks now and it's just getting worse (outside of the short improvement from the steroid burst)... Link to comment Share on other sites More sharing options...
Worried_Dad Posted March 25, 2009 Report Share Posted March 25, 2009 Hi, EAMom: He didn't actually specify a dose, just that he does 3-4 infusions once per week for consecutive weeks to see if there's improvement. Sorry I don't have more details! I think there is something about checking for IgA...if your child has low IgA there might be a reaction if you give an IVIG with high IgA. Worried Dad...did the neuro researcher rec. 3-4 IVIG infusions at the 1.5 (or 2) gm/kg dose? Or a lower dose? The immunologist we just saw is running a bunch of bloodwork to check for an immunodeficiency...that wouldn't make dd ineligible for IVIG but rather would give him something to put on the insurance form to justify IVIG if she turned out to be positive for something else. Link to comment Share on other sites More sharing options...
Healthnut Posted March 26, 2009 Report Share Posted March 26, 2009 Both of my boys were mis-diagnosed with Tics/ ADD and one boy with just Tics. 3-4 years later found out my boys have P.A.N.D.A.S. We went to A.R.C.H. medical center in Wisconsin, Dr. Brown diagnosed the P.A.N.D.A.S. For insurance reasons we switched to Dr. K. in Hinsdale Illinois. My 12 year old son just had his 90 post I.V.I.G. check up. Results have been fantastic thus far!! We are working on insurance paperwork for my 11 year old son. Getting in pre-puberty is the key. Everything Dr. K. told us has come true thus far. My wife and I were very impressed with him. E-mail me if you need more info. through this forum or personal e-mail. We have gone through so much with my boys, and doctors and hospitals not willing to look outside of the box!! I pray everyone's kids can get the help they need. james2613@comcast.net God bless. Link to comment Share on other sites More sharing options...
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