1tiredmama Posted July 26, 2012 Report Posted July 26, 2012 Just last week, I questioned dd's upcoming eval. With the exception of OCD, ds17 has every last symptom of PANDAS. He is disabled by it. His dx was no surprise and quite a relief. Dd12 has had periods of severe bipolar/anxiety symptoms, but her brother's illness overshadows hers. Last week, given dd's "grayer" picture, our PANDAS doctor gave us a probable dx and said we could treat conservatively with a trial of long-term abx. A wait-and-see approach. No surprise. But today, I got a call about dd's bloodwork. Her abx is being changed, and she needs PEX. I couldn't believe it. I mean, I should have KNOWN, but it's such an emotional thing, I think I just couldn't face it yet. I just want to lock myself in a room and take the time to comprehend this, but life doesn't allow for a day off. I know this is a good thing--absolutely. My dd can get better! But, I know that we have a long road ahead of us, and I know from ds's PANDAS the full potential this disorder has. Thank you to every parent who encouraged me to investigate the cause of dd's symptoms. When I started this journey for ds in February, it NEVER, EVER occured to me that dd might have PANDAS--even though she was homebound due to panic disorder and hiding behind her bed from her home teacher! Thank you for letting me know that siblings can be affected, too. This site, you parents, are invaluable!!!
Dedee Posted July 26, 2012 Report Posted July 26, 2012 I understand how hard it is to deal with finding out that yet another child has PANS. I too was in denial about my daughter until I was hit full force with her symptoms right after she had the flu mist. I thought I couldn't deal with a third PANS child. But you pull yourself up and do what you know you have to do. The thing that makes it easier is your previous experience. You aren't starting at square one and it sounds like you already have a plan in place. As you know, that is the hardest part. You are a very strong person and a wonderful Mother. Your kids are so lucky to have you fighting for them. Where will your daughter be having her PEX? What was the lab work that finally gave you the final diagnosis? It's good that you will be going straingt to PEX. I think she will get better much quicker that way. Stay strong and keep up the great work! Dedee
airial95 Posted July 26, 2012 Report Posted July 26, 2012 I went through similar emotions when my daughter was diagnosed as well. Her brother is so much more severe that all of her symptoms were overshadowed by his. I struggled with the guilt of having "missed" it in the first place, feeling like had I paid a bit more attention to her we would've caught it sooner. This type of thinking doesn't help anyone - trust me! The good news is that since you've been there/done that with your son - it's easier to have a plan of attack and action. The bad news (at least in our case) we haven't figured out how to be as "understanding" of her brand of PANDAS vs. her brothers. I find myself having to stop and re-evaluate if she's just being a drama queen or if this is her PANDAS flaring...
WorriedDADNMOM Posted July 27, 2012 Report Posted July 27, 2012 Tired----I sent you a PM. I also wanted to say Thanks to any parents on this forum looking to help themselves and others. I think I found this site 1st week of tic onset after strep. Every crumb or morsel of info I have gotten has mostly come from here and it has led us to more knowledge in being able to help our kids. We too have 2 pandas/Pans kids Strep and EBV and the other Strep and Mycoplasma. Yes suspected third dd6 too!!!!! With regard to missing it-----don't beat yourselves up. Our oldest dd9 had severed eczema in early years, middle dd8 had projectile vomiting, Youngest dd had SEVERE colic----------you know what the missing link was--------MILK!!!!!! Did not figure it out until youngest was 3-4 months old. I say this because immnune response to any antigen/allergy might present differently-----it did in our case for sure. Anyway-----Stay encouraged all!!!!!!
1tiredmama Posted July 28, 2012 Author Report Posted July 28, 2012 I understand how hard it is to deal with finding out that yet another child has PANS. I too was in denial about my daughter until I was hit full force with her symptoms right after she had the flu mist. I thought I couldn't deal with a third PANS child. But you pull yourself up and do what you know you have to do. The thing that makes it easier is your previous experience. You aren't starting at square one and it sounds like you already have a plan in place. As you know, that is the hardest part. You are a very strong person and a wonderful Mother. Your kids are so lucky to have you fighting for them. Where will your daughter be having her PEX? What was the lab work that finally gave you the final diagnosis? It's good that you will be going straingt to PEX. I think she will get better much quicker that way. Stay strong and keep up the great work! Dedee Dedee, thank you for such kind words. They warmed my heart. My kids will be having PEX done at Georgetown--as long as we get insurance approval. I haven't seen dd's results for myself, or spoken to the doctor, but the receptionist said dd has an active myco infection. Unless it can cause severe seasonal asthma, dd has no symptoms--other than PANDAS, of course!
1tiredmama Posted July 28, 2012 Author Report Posted July 28, 2012 Thank you, airial and Worried. You are right, it is easier the second time around (but, certainly not easy, right?) I know what you mean, airial, about girls and drama queen behavior. I have to tease it out in my house, too, sometimes.
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