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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

    Have you seen our PANDAS eBook?  Our book is a helpful primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need.  Your satisfaction is guaranteed. Learn more

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saidie10

Depressed...sad...this sucks! Excuse my french

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You know, this is about right! I came on here a few weeks ago, worried about my younger son and now my olders son's OCD is back and he has motor and vocal tics to boot all after 4 IVIG's, and a year of penicillin. His tics have been gone for so long...it is so sad to see his little body moving and he can't help it. God it hurts to watch. I guess this darn thing still needs more work. I went to the TX Symposium and have appreciated the information others have posted here because I have been so into my own depression that I don't even want to get out of bed. I am just so sad for my kiddos and really don't know what to do next! Sorry for venting. I am afraid I will be no good to them if I can't stop being so damn sad all the time! I want to continue to be a fighter guys! I really do but uuuuugggghhhh!!!!!!! Sorry again for my rant.

 

I am going to try and get my kids Immunologist to change the abx to Zithro. Thank you to Diana Pohlman for your words of encouragement and advice on Saturday. Wish me luck with him...my son(s) are his first PANDAS patients....

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Boy, I wish I could wave a wand and make it ALL go away--for your kids, my kids, & everyone's kids!! And I am the LAST person to give advice on fighting the depression thing. I just want to encourage you to take a big, deep breath, say a prayer, and come back up with a fighting spirit--for your kids and your family. (((Hugs & Prayers))) from the Midwest. Yes, this royally stinks. Dawn

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I'm sorry for your pain, I was there as well over a year ago when pandas first hit both my children hard. A DAN doc saved my kids and through the crying and lack of sleep I managed to make them comfortable while getting them thru some tough times. Its scary and sad but I have hope for all of us because I hear others with stories of recovery. I used to be paralyzed to help them I would take care of them but had fear in my body constantly now I have changed to living in the moment and day by day because we never know when pandas will hit again and it has. Sending you hugs and take 5 minutes at a time ... it will pass. Sending hugs and prayers for strength and endurance and healing.

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You know, this is about right! I came on here a few weeks ago, worried about my younger son and now my olders son's OCD is back and he has motor and vocal tics to boot all after 4 IVIG's, and a year of penicillin. His tics have been gone for so long...it is so sad to see his little body moving and he can't help it. God it hurts to watch. I guess this darn thing still needs more work. I went to the TX Symposium and have appreciated the information others have posted here because I have been so into my own depression that I don't even want to get out of bed. I am just so sad for my kiddos and really don't know what to do next! Sorry for venting. I am afraid I will be no good to them if I can't stop being so damn sad all the time! I want to continue to be a fighter guys! I really do but uuuuugggghhhh!!!!!!! Sorry again for my rant.

 

I am going to try and get my kids Immunologist to change the abx to Zithro. Thank you to Diana Pohlman for your words of encouragement and advice on Saturday. Wish me luck with him...my son(s) are his first PANDAS patients....

 

 

Also, have you checked to make sure no one else in your family is ill (like your DH, you or any other children?) Any exposure might trigger them. I'll keep my fingers crossed about the azith. I think it's a great idea.

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My son is doing extremely well on a combo of Azith and Augmentin. However, he has co-infections. What strikes me strongly is your deperssion. This is SO hard and I have been in places of anxiety and fear that made me feel like I was toppling over the edge at times. You may want to take the time to visit your doc and see if you can get some help with an SSRI (for you) to help boost you up out of the depression symptoms. You are going to be much better for your kiddos if you are feeling in control, yourself. I know it's hard, and I certainly don't do the best job of taking my own advice, but try to make some time for yourself to recharge...take care and warm wishes, Kath

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Lately, I can't stop thinking of that phrase "You're only as happy as your saddest child." And I am sad right now too, so I hear your pain. Do try to get some help, and do check the whole family for infections. Will be thinking of you.

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Thanks guys for the words of encouragement :) I think I have a plan now and that is half the battle...of course I imagine I may run into road blocks along the way but ain't nothing this Mama can't handle. I definitely have my fire back!!! I will fight for these kiddos!!!!

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Thanks guys for the words of encouragement :) I think I have a plan now and that is half the battle...of course I imagine I may run into road blocks along the way but ain't nothing this Mama can't handle. I definitely have my fire back!!! I will fight for these kiddos!!!!

Glad you are feeling better! It's tough when you think you can see the light at the end of the tunnel, you start getting comfortable, and then WHAM! Someone shuts out the light :( Been there. But at least you know they CAN get better, even if they relapse, they can still get better.

 

But, I just wanted to share this thought... when my kids are "pandasy", I'm also "pandasy" in my own way (I truly sometimes feel I am loosing my mind!). More than once, I was "it" (had my tonsils out since, but still...) We tend to focus so much on the kids we don't take care of ourselves sometimes. If you get a chance, get swabbed and titers drawn, and a physical if it's time for it.

Edited by mati's mom

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