pixiesdaddy Posted December 1, 2009 Report Share Posted December 1, 2009 Thought I would give an update on our DD9 (Pixie) who is now 3-months post-IVIG, essentially. I know that we always appreciate updates from others who have been through all of this, so we want to add our story to the mix. Basic summary: -Diagnosed with PANDAS this summer, probably had it for years. -Primary symptoms were rage attacks, big muscle spasms, separation anxiety, bed/day wetting -Did IVIG on 9/10 and 9/11 with Dr. K. -Wetting and muscle spasms disappeared within 1-2 days after IVIG. -Takes augmentin generic 2x a day - started at 250 mg 1x per day, now at 600 mg 2x per day -Supported with flax oil, melatonin, kid calm, calcium vitamins, ibuprofen How she's doing: We are 100% convinced that IVIG had a very beneficial effect on our DD. Her big muscle spasms and frequent wetting went away virtually overnight. She has (mostly) remained non-violent, starting at about 4-5 weeks after IVIG. She still has emotional lability and will get unreasonably upset at certain issues, but has found enough wherewithal and coping strategies to remain non-violent and remain verbal. We do think that she got sick again about 2 weeks ago and we've seen an exacerbation since. This led to the upping of the abx dosage. She's had some resistance to going to school, but has made it to school - one way or another - virtually every day. The biggest problem has been that I've needed to return from my workplace to assist her to school on a few occasions, not a long-term solution. We struggle with how fast and how hard to push her. School is eager to raise expectations academically, where we are happy just to have her attending. We are concerned about her low-level resistance to going to school and don't want to exacerbate that. We have started her with a chiropractor doing spinal adjustments and have an appointment with Home First in Rolling Meadows, IL to discuss homeopathic medicine and alternative treatments. We hired a 7am - 4pm caregiver at first after IVIG to help manage DD. We let her go after about 4 weeks when rage attacks decreased and DD has been managing with a 7am-10am caregiver, off and on, to assist with her getting to school. Overally, we feel strongly about the successes DD has had with IVIG. We are being really cautious with her to maintain her health and support her behaviorally and emotionally as she learns healthy coping strategies again. Pixiesdaddy Link to comment Share on other sites More sharing options...
Megs_Mom Posted December 1, 2009 Report Share Posted December 1, 2009 I am so happy for you all. You are one of the families that I think most of us follow closely, in the hopes that Pixie - and her parents - will find relief and joy. I suspect that this is still a difficult time for you. In many ways, I find that I am best in the time of crisis - it is the phases of slow improvement that are much more challenging for me as a parent, both in terms of identifing the areas of "personality" vs "behavorial learning" vs "illness" - and in term of my own patience with a chronic disease. I hope you are both finding ways to celebrate the amazing job you have done of advocating and healing your child. And I know that Pixie will continue to improve - clearly you and Manda will not have it any other way! All my best - and thank you for the update. Link to comment Share on other sites More sharing options...
ShaesMom Posted December 1, 2009 Report Share Posted December 1, 2009 Great news! Thanks for the update. I've been wondering how everything was going with Pixie. Sam Link to comment Share on other sites More sharing options...
thereishope Posted December 1, 2009 Report Share Posted December 1, 2009 Glad to hear she is doing well. Thanks for the update! Link to comment Share on other sites More sharing options...
melanie Posted December 1, 2009 Report Share Posted December 1, 2009 Glad to hear she is doing well. Thanks for the update! I was also wondering how she was.We see pretty much the same stuff you see.Dan had iv in sept and is way better but not as good as 2 1/2 weeks post IV.Anger is definitly better but still there.Are you planning to do the IV again?What is your plan? Melanie Link to comment Share on other sites More sharing options...
sf_mom Posted December 1, 2009 Report Share Posted December 1, 2009 Fantastic News!!!! Link to comment Share on other sites More sharing options...
amy s Posted December 2, 2009 Report Share Posted December 2, 2009 This sounds like good news to me! Thank you for updating us and I hope things continue to improve. Things DID continue to improve post IVIg for my dd, even after 3 and even after 6 months! Regards, amy s Link to comment Share on other sites More sharing options...
Suzan Posted December 2, 2009 Report Share Posted December 2, 2009 Great news and thanks for the update. Here's to continued improvement! Susan Link to comment Share on other sites More sharing options...
smartyjones Posted December 2, 2009 Report Share Posted December 2, 2009 We struggle with how fast and how hard to push her. School is eager to raise expectations academically, where we are happy just to have her attending. We are concerned about her low-level resistance to going to school and don't want to exacerbate that. We have started her with a chiropractor doing spinal adjustments and have an appointment with Home First in Rolling Meadows, IL to discuss homeopathic medicine and alternative treatments. Very happy to hear that things are going well. thanks for updating. the school expectations can be challenging. i think it's very hard for educators to step back from where they see the potential of the child and realize the bars need to be adjusted and are not really as low as it may seem for that child at that time. my son is a bit younger - 5 and kindergarten - in august, we had said it a number of times before they really got it that our expectation was really only showing up and good social interaction - or at the very least not bad interaction. when we finally got on the same page, they seemed relieved. since things have been going well, it's really a challenge for them to understand our goals of not to raising that bar too fast or hard. please post updates on the chiropractor and alternative treatments. i'd be very interested! Link to comment Share on other sites More sharing options...
heidischuster Posted December 2, 2009 Report Share Posted December 2, 2009 Our daughter is having IVIG on December 18 ad 19th with Dr. K. Wish us luck. I'm surprised to hear that someone is asking if you are thinking of doing it again. I thought it was a one time treatment? heidischuster Link to comment Share on other sites More sharing options...
EAMom Posted December 2, 2009 Report Share Posted December 2, 2009 Our daughter is having IVIG on December 18 ad 19th with Dr. K. Wish us luck. I'm surprised to hear that someone is asking if you are thinking of doing it again. I thought it was a one time treatment? heidischuster Hi Heidi...hopfully it is. Not always. Have you had a work-up by an immunologist? Kids with underlying immune issues are more likely to need repeat IVIG's. IMO it's also important to eradicate and prevent future strep...so I'm a big believer in long-term full-strength abs (usually azith or augmentin) both before and after IVIG. Our dd had IVIG in Aug 09....we aren't planning on doing more (but would if necessary.) She's 54 pounds and is on Azith 250mg (since June 08) daily. In Swedo's PEX/IVIG study, there were a few kids that needed a repeat of IVIG (or pex) after strep exposure. So, I also feel that it's important to keep the immune system quiet in the months/year post-IVIG (avoid strep, viruses, I'd also stay away from vaccines) while the immune system is repairing. I would definitely encourage you to check family members for strep (throat cultures...do the 72 hour culture if the rapid is negative) to make sure you don't have any carriers in the house that could re-expose your child post IVIG. Our younger dd is a "carrier" (gets strep w/out other symptoms) and our PANDAS dd will react to that (despite being on abs). When she was really sick (Spring 08) we only got things under control when 1) we "discovered" azithromycin 2) we erradicated strep from younger sister (with Azith.--augmentin didn't work for us). Interestingly, DCmom was in contact with a family from the original Swedo study...all the kids in the household were put on abs to keep strep out of the household after the PANDAS dd had PEX. After the PANDAS dd went through puberty...the younger kids went off abs...but then one of the siblings then ended up getting PANDAS as well! Link to comment Share on other sites More sharing options...
sf_mom Posted December 2, 2009 Report Share Posted December 2, 2009 Wishing you the best of luck too... We have done two IVIG treatments with Dr. K and praying a third isn't required. Our son presented with mostly TICS and mild OCD. TICS are much harder to eradicate, there are underlying immune issues with our son and we know he was exposed to RF, got ill and went untreated..... was most likely was undiagnosed Kawasaki's. With Kawasaki's sometimes several rounds of IVIG are required and antibiotics do not work independently. Remain hopeful that only one treatment is required but prepared to retreat if needed. -Wendy Our daughter is having IVIG on December 18 ad 19th with Dr. K. Wish us luck. I'm surprised to hear that someone is asking if you are thinking of doing it again. I thought it was a one time treatment? heidischuster Link to comment Share on other sites More sharing options...
EAMom Posted December 3, 2009 Report Share Posted December 3, 2009 I should add...we had IVIG done locally (N. CA). We did a higher dose (2gm/kg over 2 days--the Swedo study dose) than Dr. K. does (1.5gm/kg over 2 days) in the hope that a higher dose would give us a better chance of sucess with 1 treatment. Our dd was a bit older (9 years) and had a hx of anorexia (which is another symptom that can be tough to clear) which is one reason why we did the higher dose. Link to comment Share on other sites More sharing options...
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