Ahh... the STRESS of all this...

[ajcire]

Even better!

 

 

 

 

How about, "You can't HANDLE strep!"

Isabel, I love it! Kinda makes you feel like yelling that at some of the doctors too.... You want the truth? You can't HANDLE Pandas!

 

 

 

 

But I guess I need to write this down for cathartic purposes. Maybe I need a therapist

 

Hi Karen,

I know how you feel! I could go on with my own experiences, but I thought I would share with you'll a little cathartic exercise I found in a homeschooling website (yes, we homeschooling moms need to let it out every now and then!!!)

 

http://thepioneerwoman.com/homeschooling/2...artic-exercise/

 

Don't mean to be disrespectful to anyone's feeling (I so there myself), but I thought a little humor would help

 

Isabel

[tpotter]

Oh my....this is just like me. My son was already sick, but we didn't have the dx,yet. It was only after our move here that we found out, and with all the time I spent trying to get dx, tx, school district issues, pulling him out of school, etc., etc., I have no close friends here, either. I feel SO much better (in a very strange sense...which only you guys can really understand.) Yes, I totally agree...this is very cathartic. Thank you all.

[tpotter]

I'll have you know that 4 years later my son actually went to sleep away camp for a week (he has now gone 2 years in a row) without ANY behavioral problems. In fact, he won the award for "most polite" one year!

 

Having a child who is different is often painful and lonely. In the end, though, what really matters is person your child becomes. I have learned that many of the mothers who would not let their children play with my son when he was younger now call me for advice as their children have presented with challenges along the way.

 

I wish you well on this journey.

 

 

Thank you for giving me hope about camp. We have never been able to do it, because of all the fear of oncoming symptoms.

[momaine]

Please know you are not alone. Know that you are in my thoughts and that I understand what you are going through. I wish I were able to help you but I can barely help myself, at this point.

 

This is a timely post for me as I'm feeling very lonely and frustrated dealing with this shitty disorder the last few days. I've alway prided myself on the relationships I've had with my children. We've always been open and honest with each other and I've taught them to communicate well.

 

Until this disorder hit, we were a very peaceful, respectful, and loving family. Now there are days I scream at my dd and say mean things back to her when she just can't help herself. It's like I've fallen into a nightmare and cannot wake up. The worst of it is that my dd needs me to watch her rituals. Some days she asks me to watch her varying from every few seconds to every few minutes. I felt like I was born to be a mother until this last year and now I dream of running away. I wish I had more patience to deal with this. My husband works out of town and though my family and friends help me some, they really have no idea how bad things are here.

 

I hope that writing this out helps me in some way. I've been very teary these last few days and my kids have grown used to seeing me cry and they don't even seem like they care. I feel so alone.

 

The good news is we finally have all the test results in to submit to insurance to try to get coverage for IVIG. In a weeks time we should know. Whether or not they cover it, we will go ahead with it. I cannot live like this any longer, nor can my beautiful but tormented daughter. No one should have to live like this.

 

Angela

[ma2ar2rm2]

I don’t even know how to start this because I actually feel guilty that I’m frustrated. I’m not looking for a pity party – and I know – I really, really do know – that life could be worse, or harder, etc. But I guess I need to write this down for cathartic purposes. Maybe I need a therapist – maybe I need to listen to the people’s comments that I’ll mention below – maybe I just don’t even know what I’m talking about. But I know that all of us here are in the same boat – I know because I’ve read many of the stories, felt much of the frustration in those stories, and grieved the same grief in those stories. I have truly counted my blessings over and over that the situation in my family is milder than many of the stories I’ve read on here, and I’ve said many prayers for the stories I’ve read and just can’t imagine having to live through…

 

That said – I am having such a hard time with people: neighbors, relatives, school personnel, etc. I am so sick of the “semi-eye-rolls” and nonchalance with which they give their opinions regarding:

“Oh, it’s just strep”

“Oh, I know everything about strep – I’m a carrier and it’s no big deal – my child has had strep umpteen times”

“He seems fine – I see him shooting hoops in your backyard”

“Why aren’t you letting him go to school (insert eye roll) – you are making him think he’s sick – you are making it worse for him”

“Well, my neighbor has brain cancer – things could be worse – it’s just strep,”

“Oh… strep… well, it’s not like he’s dying, or anything”

“Don’t talk to me about this – I don’t agree with how you are making people think he’s sick”

 

I could go on and on - - maybe I need to have thicker skin - - I try to explain, but many people are so quick to point out situations they know about in other people that they think are bad, and that what my son “has” is not that bad. And I really should explain to you all that I don’t really talk about this with many people. People find out some things because I’ve kept him out of school a lot, and I haven’t sent him back after IVIG. I don’t really discuss it with relatives outside of my own immediate family because they are the big “oh my god (insert disgusted eye-rolls)” people.

 

The first 3 months of this – from September ’09, through December ’09 – I literally spent my days (probably 18 hours per day) researching and on my knees praying. Praying for guidance, praying for decision-making, praying for healing, just praying… I had the “chuckling at me” pediatrician, the relatives rolling their eyes and seemingly satisfied that it was mental illness and that I was looking for a crutch, etc., etc., etc….

 

Then (this is a very abbreviated version), I found a DAN! doctor 3 hours away from my home who tested for many things including strep/PANDAS. Then I got him on antibiotics. Then I found you all. Then, when the doctor did more immunological testing - - I found my way to Dr. B! Everything’s not great, but I have hope that it will be…

 

Yet here I sit, (after more comments last night from the “strep carrier” neighbor who thinks she knows everything – and is quick to point out that she knows somebody with a brain tumor – and is insisting that I need to bring my son over to play with her son before they move because it’s no big deal that she’s a strep carrier) feeling guilty that I am literally barely able to cope with life in general. I know that it’s probably depression and exhaustion from months of this, and many more months to come…

 

But, why can’t these people shut up? Why do they roll their eyes? Why are they accusatory that because I kept my son out of school that I’m causing him to think he’s sick? Why, oh why?

 

They haven’t spent every night since September going to bed with him – he can’t even GO to bed without one of us laying with him. They haven’t spent hours per day trying to not answer the math questioning rituals. They haven’t had their child checked for lice over and over again because he feels like something is on his head (though “strep carrier neighbor” is one of the school personnel who sends him to be checked). They haven’t spent months keeping track of the verbal ticcing – sometimes 50 to 60 times per minute. They haven’t had other kids turn to their child and ask why they are making that “huh” noise all the time. I could go on and on – I know we all could…

 

But I just am so sick of this that I have literally just shut down. I guess I just had to write this down. Thanks for listening…

 

- Karen

 

Oh Karen(that is my name also BTW )

I'm so so sorry you are going though this.. my dd who is 8 has PANDAS we just found this out 3 weeks ago so I haven't really incountered any eye rolling people.. Except One... All my family are just so happy that we have figured out what was going on with Sweet Pea(that seems to be my internet name for her) and that she is getting help.. Not a one of them questions any of this except my sister who lives in TX and only sees dd once or maybe twice a year so she really doesn't understand what all we have been going though.. The one eye rolling person is my DD's 2nd grade teacher.. I went to her to explain what we have been going though she looked at me like I was nuts because Sweet Pea does wonderful in school.. her only thing you could see as an outsider watching her though out the school year was the way she dressed.. Everything was hurting her anything touching her skin was hurting her.. Sweet Pea is a size 7 or 8 girls cloths wise.. But has started wearing 14's and even those she said was too tight and hurting her... She would spend hours crying and crying and crying at home.. but at school seemed fine.. So her teacher sort of didn't believe me. Then I went to her about 3 weeks later and told her that the doctor has figured things out and it was called PANDAS.. and I explained it a little to her and I told her how important it was that I do all that I can to keep her healthy and strep free.. She rolled her eyes at me and said well maybe you should pull her out of school because Strep is like an every week thing around here.. I understand this to a point.. I use to look at strep that way.. all 4 of my kids have had strep more times then I can count and I never worried about it.. just marked it up as sort of like a cold only you get an antibiodic for strep and a cold you don't.. UNTIL NOW.. now that i can see how awful that strep can make my childs life and how scary it is for her and how it is affecting her brain.

I tried to get that point across to the teacher also.. and then asked her to just let me know when there was strep in the class room because I really do need to know when she has been exposed to it.

Well there is strep in her class now(and my older son has it also) But the teacher did not tell me about the kid who in the class who has the strep I found it out from another parent...

I'm so ready to scream.. but there are only 8 more days of school left this year.. So I'm not going to make an issue of it.. but next school year.. when I know more and have learned more about PANDAS.. I'm going to meet with her new teacher and princible explain it all to them.. Make sure they understand.. and make sure I have them on my side to help me with this..

I have been so blessed with my family and with Sweet Pea's friends parents being really understanding when I explain it to them.. and they have been very helpful... and so blessed with a doctor who while never having treated PANDAS before found it quickly and was willing to treat it the way it needs to be. We also started seeing a councellor lastweek who has done some studying up on PANDAS and is willing to work to get Sweet Pea the help she needs and work with her doctors.

I'm sorry for the eyerollers in your life and I"m glad the strep carrier is moving.. the far away the better..((((HUGS))))

[Phasmid]

Hang in there Angela. You are too close to the edge! I know that place. Start running if you can. Run or walk as often and for as long as you can. That helped me so much. Granted, it was only about an hour of the day, but that hour where my brain did no thinking, no worrying, stressing, hypothesizing, solving, asking, etc., was enough to save my sanity. Listen to music as you run, and sing along. Find something every day to laugh at, whether it is a joke book, comic, stupid cat video on You Tube, whatever. Get 15 minutes of full on sunshine. If you need, go get some meds. I had to and it is nothing to be ashamed of. Just hang in there... someone can help her.

[momaine]

Hang in there Angela. You are too close to the edge! I know that place. Start running if you can. Run or walk as often and for as long as you can. That helped me so much. Granted, it was only about an hour of the day, but that hour where my brain did no thinking, no worrying, stressing, hypothesizing, solving, asking, etc., was enough to save my sanity. Listen to music as you run, and sing along. Find something every day to laugh at, whether it is a joke book, comic, stupid cat video on You Tube, whatever. Get 15 minutes of full on sunshine. If you need, go get some meds. I had to and it is nothing to be ashamed of. Just hang in there... someone can help her.

 

Thanks for the support phasmid. My dd has horrible separation anxiety so leaving even for a walk isn't an option . Most days I cannot even run into a store and pick up something without leaving her with my mom or someone else. Hopefully, with IVIG in our near future, the worst of it will soon be a thing of the past. Today is day 7 of our latest prednisone burst/taper which usually kicks in around this time. That will make a big difference too. I'm trying to hang in there. This isn't a whole lot of fun though.

 

I saw on a local news program last night that Mystery Diagnosis is here in Maine filming Sammy's story, to be aired later this year. It's hard to believe that this is so rarely diagnosed as to be on that show when you hang out on this forum. I hope that it makes other people's journey easier than ours has been.

 

Angela

[smartyjones]

but I can barely help myself, at this point.

 

Until this disorder hit, we were a very peaceful, respectful, and loving family. Now there are days I scream at my dd and say mean things back to her when she just can't help herself. It's like I've fallen into a nightmare and cannot wake up. The worst of it is that my dd needs me to watch her rituals.

I hope that writing this out helps me in some way. I've been very teary these last few days and my kids have grown used to seeing me cry and they don't even seem like they care. I feel so alone.

Angela

 

oh angela - i am sad to read your post, but of course, totally understand. would it help you to create a mantra in your mind? something like 'i am peaceful, respectful and loving with my daughter'. let all other thoughts go except just focusing on those words -- b/c it really is the truth, it's just shrouded in pandas now. i can find that helpful when i am slipping over the edge. or since you're close to ivig, 'help is on it's way'.

 

could you work out some plan for you being involved in the rituals? my son needed me to be with him in the bathroom. it drove me crazy b/c it was usually in a sense of panic with him yelling at me and all i wanted to do was run away, certainly not be patient in the bathroom. we set up a plan that i'd take one step away each time, then i got out, then out of sight, etc. i think it also gave me a sense of control that i wasn't a slave to his panic.

 

a long time ago someone told me "you know what they say about when you're in h***, just keep walking!"