Buster Posted August 8, 2009 Report Share Posted August 8, 2009 Hi Folks, I posted this within another thread but figured I'd pull it out to its own topic. We went ahead with IVIG this past week for dd9. We were able to convince our immunologist to treat locally. We did a short run of prednisone for 6 days. We saw no effect until 10 days post-burst. At 10 days we had a noticable reduction in movement disorder, social anxiety, separation anxiety, measurements, and restrictive eating. The effect lasted for 4 days and then we returned to baseline. We decided to do IVIG because exacerbations were continuing despite propholaxis azith and dd9's baseline of symptoms had risen significantly over past year. We decided on IVIG over PEX in hope that there is something to IVIG resetting T regulatory cells (per article below by Aharon). We're really hoping it is curative versus just reducing the antibodies. Unfortunately, we won't know for a while. dd9 did great and had no apparent adverse effects from the IVIG. We were concerned because of high dose and moderate flow rate (52 ml/hr). It took a long time (7 hours/day for 2 days). We're 2 days post IVIG. dd9 had a slight fever (100 degree) and a slight headache, but oddly is in a good mood and headache is addressable with tylenol. We'll post as we learn more. For those tracking, dd9's CaM Kinase II was 183% in April without exacerbation and 253% in July during exacerbation. Buster Link to comment Share on other sites More sharing options...
Kayanne Posted August 8, 2009 Report Share Posted August 8, 2009 I'm glad to hear the procedure went well...keep us posted. Thank you for all that you do post on this forum...I've learned so much from your info... Here's hoping that this is the end of the stress of PANDAS for your family! ~Karen Link to comment Share on other sites More sharing options...
Worried_Dad Posted August 14, 2009 Report Share Posted August 14, 2009 Hi, Buster: You and EAMom have helped so many of us on this forum SO much with all the great info you've shared and the insights you've provided. I pray that this does the trick for your daughter and beats the damn PANDAS into oblivion! Best of luck to your whole family. Brian Link to comment Share on other sites More sharing options...
T_Mom Posted August 15, 2009 Report Share Posted August 15, 2009 Hi, Buster: You and EAMom have helped so many of us on this forum SO much with all the great info you've shared and the insights you've provided. I pray that this does the trick for your daughter and beats the damn PANDAS into oblivion! Best of luck to your whole family. Brian I must "second" Brian's reply-- All the best as the next months unfold, may there be a complete reversal and healing. You and EAMom are greatly appreciated-- Link to comment Share on other sites More sharing options...
EAMom Posted August 15, 2009 Report Share Posted August 15, 2009 Thanks for all the support!! This week (1 week post IVIG) dd9 has been quite irritable. She did have several "rage" type tantrums. She seemed a bit better yesterday though, knock on wood. She also is doing her "measurement rituals" (likely compulsions, not tics) which happen during an exacerbation. I know it is really too early to tell what will happen. But, it sure would have been more reassuring to see an obvious dramatic improvement. I sent Dr. K. and e-mail (our immunologist doesn't really know that much about the ins and outs of PANDAS, Dr. K. does) and he basically said to sit tight and give it 1-2 months. I must admit it's a bit nerve wracking. My heart sinks everytime she goes into one of those insane tantrums... Link to comment Share on other sites More sharing options...
ShaesMom Posted August 15, 2009 Report Share Posted August 15, 2009 Thanks for all the support!! This week (1 week post IVIG) dd9 has been quite irritable. She did have several "rage" type tantrums. She seemed a bit better yesterday though, knock on wood. She also is doing her "measurement rituals" (likely compulsions, not tics) which happen during an exacerbation. I know it is really too early to tell what will happen. But, it sure would have been more reassuring to see an obvious dramatic improvement. I sent Dr. K. and e-mail (our immunologist doesn't really know that much about the ins and outs of PANDAS, Dr. K. does) and he basically said to sit tight and give it 1-2 months. I must admit it's a bit nerve wracking. My heart sinks everytime she goes into one of those insane tantrums... Sorry to hear you guys haven't seen more improvements. I understand how stressful it is waiting and watching constantly. That first week my hubby and I were ready to call IVIG a complete failure but she has continued to improve every day. We are a month out now and she still has some raging here and there but she asked me to take her out for breakfast this morning. She hasn't wanted to eat out for probably 8 months so this seemed HUGE! Hang in there! Link to comment Share on other sites More sharing options...
EAMom Posted August 17, 2009 Report Share Posted August 17, 2009 Hi Shaesmom, that is reasurring news. I'm so glad your dd is doing better too. Dd9 seems better the past couple of days. We've been taking it easy not doing much, which might be helping. She's been calmer, no big rages, she's been nicer to her sister today as well. Hopefully those are all good signs. Link to comment Share on other sites More sharing options...
ShaesMom Posted August 19, 2009 Report Share Posted August 19, 2009 Hi EAMom, Just thinking about you and hoping that all is going well this week and she is still improving. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted August 19, 2009 Report Share Posted August 19, 2009 Buster: How is your daughter doing post-IVIG? We are currently waiting to do IVIG. Hopefully in 2 weeks!! I think my son has strep again, although his rapid test came back negative. I can't find a doctor to give him antibiotics. If he goes into IVIG with a current strep infection, will that make the chances of IVIG less successful? elizabeth Link to comment Share on other sites More sharing options...
Buster Posted August 19, 2009 Author Report Share Posted August 19, 2009 Overall we're doing better. It's been a weird 2 weeks though. Week 1 -- Wild oscillations between elation/joy and rages/frustration. Literally angry one minute and happy the next. It was like seeing prior exacerbations on fast forward. Measurement rituals returned full force. Restrictive eating returned. Contamination fears returned. Separation anxiety really high. Week 2 -- Mixture of calm with wild rages more distance between them. Beginning of week, she was shouting and stuck on how things must be done. Couldn't accept things that were disappointments. Couldn't be reasoned with. She kept saying "listen, listen" but couldn't express what was driving her extreme behavior. She was struggling with writing -- lots of shaking in letter formation. She was full of tears and frustration. By end of week, she's calm again. Hmm... Having some trouble sleeping -- wants to stay up. Week 3 -- started with her being incredibly nice to sister. Her caring side is back. She's drawing again. It seems she has more control over her hands. We'll ask her to draw a house again/write a paragraph and compare to week 1. That's sort of where we are.... By the way, she had fever for 3 days post IVIG. In terms of strep and IVIG -- shouldn't make a difference. The bunch of antibodies you get should take out anything there and those antibodies should be there for 30+ days. It is totally unclear what to do post IVIG, we'll probably keep our dd9 on antibiotics for a while while we check blood levels and sensitivity to strep in others. Regards, Buster Buster: How is your daughter doing post-IVIG? We are currently waiting to do IVIG. Hopefully in 2 weeks!! I think my son has strep again, although his rapid test came back negative. I can't find a doctor to give him antibiotics. If he goes into IVIG with a current strep infection, will that make the chances of IVIG less successful? elizabeth Link to comment Share on other sites More sharing options...
EAMom Posted August 19, 2009 Report Share Posted August 19, 2009 Elizabeth...is your son going to get prophylactic antibiotics after IVIG? I believe it's really important to do so to prevent strep infections post IVIG or you may be back to square one. I would actually vote for something "full-strength", at least 'till things are calmed down. Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted August 19, 2009 Report Share Posted August 19, 2009 Hello: No, we are not on antibiotics right now... We are in this crazy situation where we are working with 3 doctors who "sort of" believe in PANDAS. Our regular pediatrician and our "holistic" pediatrician believe, but have no experience with PANDAS. We have found a Pediatric oncologist/hematologist who is willing to do the IVIG, but is nervous about a year of antibiotics. We feel like no one wants to "own" the responsibility of treating us. I do feel lucky that we can possibly get the IVIG done soon. We have consulted with Dr. K, but my guess is that he cannot prescribed antibiotics unless he actually sees the child in person. In my desperate moments (which are often) I think that we should just move to Chicago so we can be close to Dr. K!!! Our whole life is now focused on this disease. Elizabeth Link to comment Share on other sites More sharing options...
TiredMom Posted August 20, 2009 Report Share Posted August 20, 2009 "Overall we're doing better" That's great news. All my prayers and best wishes that the healing continues, and those improvements keep rolling in! Peggy Link to comment Share on other sites More sharing options...
colleenrn Posted August 20, 2009 Report Share Posted August 20, 2009 Elizabeth- Did they also do a 72 hr. culture? Lots of kids have neg. rapids, but pos. cultures. Sometimes my kids have neg. cultures also, but I know they have strep and they respond to antibiotics. Colleen Link to comment Share on other sites More sharing options...
KeithandElizabeth Posted August 20, 2009 Report Share Posted August 20, 2009 Colleen: We are waiting on the results of the 72 hour strep test. I also ordered a strep kit on line since he seems to have a positive strep test 2 weeks after finishing antibiotics. The rest of the family does not seem to be carriers. I just need to convince a local doctor to give us the longer term antibiotics. elizabeth Link to comment Share on other sites More sharing options...
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