Wednesday, October 03, 2012

Child with PANDAS Taken from Parents via Boston Children’s Hospital

In my last blog post I mentioned I was in a ticked off mood.. This is why..  I know since Sweet Pea came down with PANDAS I haven't been keeping up with my blog so it will take sometime to get you all caught up but I don't have that time and I think that is why I have stayed away from my blog, I just don't know where to start.. So if your lost I'm sorry..  but I now have two children Dx with PANDAS both Sweet Pea and Mr Man.. and we are 99.9% sure Little Man has it also.  but that is neither here nor there at this time...  

This story about this little girl has been all over the facebook and PANDAS world today and it is breaking my heart. 
Here is a blog that can tell the story.. read it 1st. 

 I am so sick over this.. I have been going from wanting to jump on a plane and punch some...
one in the face, to crying and fighting back tears... This NEVER should have happened and in a Childrens hospital none the less.. where doctors should be up to date on childhood stuff like PANDAS... UGH UGH UGH... I have two children Dx with PANDAS and at my daughters onset and worst of it all.. she refused to eat, she couldnt' wear cloths due to sesnory issues from PANDAS along with the extream spereation anxeity.. when I sought help from the Pedi he Dx her with OCD, high anxeity and a conversion disorder(his reason for the sensory stuff) a few weeks after that all heck broke loose... she stopped eating altogher, stopped sleeping, did nothing but scream and cry while she sat naked in the middle of my bed rocking back and forth she couldn't lean back on the couch or chair cuz she said it felt like people were stabbing her with a knife(though at the time she wasn't telling me this stuff just screaming her head off in pain) she couldn't sleep because laying down on the bed sheets put her in pain also.. she sat with her arms around her knees rocking back and forth just crying till she would get so tired she would passout and fall over, only it would only be for a bit because falling over waking up and feeling the stuff touching her had her screaming and rocking again... My husband wanted to rush her to the ER. he was worried she was going to dehydrate.. I fought with him, because I already had one doctor her Pedi trying to get her in with a psychiatrist, I just had this sick gut feeling if I took her in to the hospital in this state they would think she was crazy and want to admit her into the psych ward and I didn't want that for her.. so I fought with my husband... I was worried if they did that they would make me leave her and she was already having complete melt downs if I took two steps away from her, I couldn't do that to her.. Only after 3 days of this I was getting worried also and was trying everything to get something into her.. on day 3 of this.. she fell asleep.. it was only for 30 mins but it was sleep after 3 days of none(for both of us) when she woke up she was running a fever.. So I did get her into the pedi's office.. which was no easy task for a child who wouldn't put cloths on and I had to force cloths on her(even through they were way to big on her hung like tents on her she was still screaming they were too tight, get them off me they are killing me) she screamed for 2 hours non stop in the office jumping up and down bitting and tearing at the cloths, rolling on the floor, standing on chairs screaming at the top of her lungs that they are killing her while trying to rip the cloths inhalf. That day she tested pos. for strep.. We saw an NP that day.. it took 5 adults to hold down my at the time 8 year old 30 some pound daughter and 1 to pry her mouth open to get the strep swab. I looked at the NP.. and I said.. can you please call her Pedi and tell him about this right away.. this is the stuff I was telling him about that he didn't see when I brought her in.. That night her Pedi called me and told me he had good news and bad news.. Good new he no longer thought it was a conversion disorder, Bad news he thought she had something called PANDAS.. later I found out that when the NP called the Pedi, she told him "this child doesn't need a doctor she needs an exorcist. I think back to those time with my daughter and I can see how this could be us in this same spot.. Last year my son was hit bad with PANDAS his biggest symptoms were tics and movments all bought on along with a strep infection.. and the doctors still wanted to call it conversion disorder, wouldn't treat him beyond the 10 day couse of antibiotics for the strep after those 10 days he got so much worse to where they admitted him into the Akron Childrens Hopsitals.. where I had all the doctors telling me yes they know about PANDAS.. because I kept telling them that is what this is.. I had been dealing with it for a few years with my daughter at that point(though she didn't have the tics) His ASO were elevated while at the hospital and for god sake this All started along with a strep throat.. and they still told us NO it wasn't PANDAS it was a conversion disorder, they brought psych in.. and asked me and my husband to leave the room.. then they brought us back in and told us.. that when we were there my son was worse and that we are making him worse and that this was all because we were pushing him to play football..(which by the way was never the case.. He loved football but when PANDAS hit he was deadly afraid that if he played football he would die.. only the 1st day his fears hit I didn't know we were dealing with PANDAS he just was saying I dont' want to go to practice, I cant go to practice.. and I told him to go practice... that was what they were going on for us pushing him to play) He was admitted in the hospital for a week they ran every test known to man.. and I kept putting paper after paper research after research into these doctors hands.. (they didn't like me much) and when the doctor told me it was not PANDAS it was a conversion disorder I told him he was wrong... that went over really well... but by the time we left they had upset my son telling him this was all in his head and that he had to take the Rx and "believe really believe" that he would get better and he would...

WTHeck.. magic pills.. they Rx him Risperdal that is the pill the doctor told my 12 year old he had to take and then "believe really believe it would work" At this point i knew I was getting nowhere so I took the Rx and never filled it just so they would let him go home.

I guess.. this all just is eating at me... I can not imagen how scared any child would be being taken away from there parents.. but having PANDAS children and knowing and seeing 1st hand there fears and thoughts and how extream the anxeity is.. I feel like my heart is being tore in two for this little girl.. I wish there was something I could do to help and to keep this from ever  

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