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That is just not true what they told you. He is your son, you checked him in there voluntarily, and you can check him out. You are his mother and you have that right.

 

I know that there can be that "threat" of insurance paying or not with AMA's, but I have not seen that happen.

 

I am not in any way trying to tell you what to do, I just feel they are giving you the run around b/c the doctor does want to deal with it tonight. It happens a lot.

 

Colleen

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That hospital and doctors are making me mad! They think they know PANDAS, they don't. Just remind your son you are not punishing him and you love him. Tell him ther are many peolpe fighting for him to get better!

 

 

When are these kids ever going to be treated correctly?

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That hospital and doctors are making me mad! They think they know PANDAS, they don't. Just remind your son you are not punishing him and you love him. Tell him ther are many peolpe fighting for him to get better!

 

 

When are these kids ever going to be treated correctly?

 

Against medical advise

 

I think if you say that

I read a book once that a father said to do that?

 

Melanie

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Sad to say I didn't get to come home with my son ) : Their admit policy that "both my son and I signed on a voluntary admission states written request must be made and discharge will be no later than the end of the next working day of the court. " I did get to visit with him though and he was sad they took two of his free times as his punishment for coming back in 24 hrs, he has bite marks all over his arms and this is from when he first came in when we left he said it was too hard to see us go and he had a meltdown, they put him in a room and locked the door. He said he slammed his head into the walls ( no they are not padded) and bit himself and tried to choke himself, they left him there for about an hour ( WELL- I am about 100 percent positive I keep him safer than that at home- he tries to bite but I would never just sit by and let him do it willfully. He said when he saw the dr that morning he told him he would be there for quite awhile this time. His rash did look better tonight, I asked him about his headache, they have on his "as needed" sheet ibuprofen for headaches and joint pain, he said he asked for some and they told him no they were out. So he went to his room and laid down. No wonder he had a headache if they let him hit it on the wall repeatedly. He said he is doing everything they are telling him to do and just trying to stay "hidden" so they don't get mad at him. He said the evening nurse is the most mad at him - she says she is so disappointed in him for coming back in and he feels like she keeps giving him the "evil eye" .

It was so hard to leave him tonight, of course crying in front of him is not an option so that was difficult, but I just hugged him and told him to stay very strong and I was working on getting him out. His dad said ' thats it we are calling the atty tomorrow.

Upon leaving they told me he is just the best behaved kid they have when he is in there, which is just really unfortunate that they don't see what he's like other than that. WHAT? then why are they keeping him geez, this is ridiculous.

Got home, and Dr K got back with me that this was no problem if the psychiatrist called him but he was only available in am, cause he was leaving for the week. So that means this "really busy" psych who through third party states he doesn't know when he will have time to call is getting a call from me early in the morn to get on this , if he doesn't I am def calling the atty. I don't know if it will do any good, but this is ridiculous.

GOOD NEWS from the bank though so that means we can go through faster with the IVIG. Thank you for the prayers!!!

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My heart aches with you -- I can only imagine, and I know your heart is breaking.

I think you have gotten some excellent advice here--from the forum. Your dear son, and your entire family is going through the worst of it.

 

I have nothing to add but that I will be anxious to hear another update tomorrow, and keep you all in our prayers.

 

I guess I would say (to us all), keep calling and demanding, this is your child suffering. You have done a GREAT job getting to Dr. K and you are on a path of trying to recover--I'd just encourage you to not grow weary. Call and demand.

 

I 'd continue to try to reach Dr. K. asap and get him to call the hospital--getting a strong dose of an antibiotic to try asap is worth a try--IF it is effective then that would provide support for IVIG, one would think, as it may be anti-inflammatory effects, could still do steroids later. (If you use Augmentin, I would use the Augmentin XR. We had good results with that, as compared to regular Augmentin.)

 

Your son's story reminds me of the interview Diane Rehm did yesterday on NPR with the woman who wrote on "sleeping sickness". The author noted that in children, the sleeping sickness encephalitis often ended up getting them institutionalized in the early part of the century for raging behaviors--when they should have been treated for brain inflammation. The interview is online and worth listening to--similar issues with children and behaviors as with our Pandas children.

Hold steady--Bless you.

 

http://wamu.org/programs/dr/

click on the "Molly Caldwell Crosby Asleep" for the online recording March 2, 2010

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So so sorry! What a horror story. I hope you just get him out of there, and I hope he NEVER goes back! These people are not helping him - sounds like they are making matters worse. Dr. K is really spoken highly of here (on forum), and I think you are in good hands with him.

Hoping and praying you get solutions and fast!! Dr. T is another good choice if you need someone else to turn to. He's a very very caring person, along with being highly skilled in this area.

God bless you and your family.. I hope you never have to go through this again.

Noelle

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It's time to camp out at the hospital and start threatening legal action if you don't see the psychiatrist. Or say that you want to bring him to be checked our by a "reg doctor" after slamming his head in the wall to rule out concussion. Don't do it via the phone anymore.At that point, whatever dr you see, have them call Dr K. Or that you will call news outlets.

 

Can Dr K write/type out the recomendation for meds and email/fax it over to you and the hospital in the event that you don't get it all coordinated in time?

 

I still say camp out and don't move until you are seen by the right people.

 

This doesn't seem legal. It's not right!I swear, if I could get to you right now, I'd be right next you getting your son help.

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It's time to camp out at the hospital and start threatening legal action if you don't see the psychiatrist. Or say that you want to bring him to be checked our by a "reg doctor" after slamming his head in the wall to rule out concussion. Don't do it via the phone anymore.At that point, whatever dr you see, have them call Dr K. Or that you will call news outlets.

 

Can Dr K write/type out the recomendation for meds and email/fax it over to you and the hospital in the event that you don't get it all coordinated in time?

 

I still say camp out and don't move until you are seen by the right people.

 

This doesn't seem legal. It's not right!I swear, if I could get to you right now, I'd be right next you getting your son help.

 

I barely slept at all last night, thinking about it nonstop. I'm going to start calling right away at 9 when the psych gets in, I am so worried he won't try to get ahold of Dr K in time and then try to keep him until he does. So this is a great suggestion about having him email or fax his recommendation!! This will also help if we have to contact our atty this morning too.

I ald feel with all the suggestions and caring everyone is giving that you all are right here fighting this with us, we appreciate it from everyone!

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I am so sorry for what they are putting you and your son through. I still think what they are telling you is not correct. What state do you live in?

 

You do not put a 9 year old child in a NON padded locked room. If he was banging his head against the wall, he could have a head injury. It makes me sick that they let this go on for an hour. This is very dangerous. That should have never happened. It blows my mind that his physician did not have time for you yesterday.

 

If they will not let you take him home today, I would call an attorney. I would find out who the Nurse manager is for the hospital and insist you talk with her/him this morning. Don't be above threatening to sue them. Maybe they will cave.

 

I am so sorry this is going on. This should not be happening to our children and it infuriates me. It infuriates me as a mom and as a nurse. How dare a nurse tell a little boy she is "disappointed" in him for returning so soon. That is why she is working in a psychiatric hospital.

 

Please let me know if there is anything I can do to help. You can PM me if you want.

 

Take care and stay strong. He is your child and you have the rights, not the hospital.

 

Colleen

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I am so sorry for what they are putting you and your son through. I still think what they are telling you is not correct. What state do you live in?

 

You do not put a 9 year old child in a NON padded locked room. If he was banging his head against the wall, he could have a head injury. It makes me sick that they let this go on for an hour. This is very dangerous. That should have never happened. It blows my mind that his physician did not have time for you yesterday.

 

If they will not let you take him home today, I would call an attorney. I would find out who the Nurse manager is for the hospital and insist you talk with her/him this morning. Don't be above threatening to sue them. Maybe they will cave.

 

I am so sorry this is going on. This should not be happening to our children and it infuriates me. It infuriates me as a mom and as a nurse. How dare a nurse tell a little boy she is "disappointed" in him for returning so soon. That is why she is working in a psychiatric hospital.

 

Please let me know if there is anything I can do to help. You can PM me if you want.

 

Take care and stay strong. He is your child and you have the rights, not the hospital.

 

Colleen

I have to say, colleenrn is correct. You are your son's advocate, not the doctors or nurses. I would also be concerned about a head injury. You also do not have to leave until you are satisified. If they try to make you leave by threatening security on you to escort you out, then you need legal action asap. Just always try to appear as calm as you can, even if you are freaking out inside. Go up the chain of command. Every hospital has a chain of command. If the regular psychiatrist does not help, go above him to the the department chair or chief.

They have already screwed up by leaving him in there to bang his head like that, and that needs addressed. ASAP.

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.... I have nothing to say but fight, fight, fight,,,, you wouldn't see me leaving until I got my way or they arrested me. The loud squeaky wheel gets the oil and this is your son. If you feel like this is the safest spot, then I respect that decision, but you must demand the right medical treatment. You keep asking for the next person in charge... until you get what you want...

 

I can see myself standing on the nurses station yelling for the manager now...

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THEY ARE DISCHARGING HIM!!!! Got the call this morning, of course not from the psych - still haven't heard from him but am very excited to go pick him up. They told me they will be talking with Dr K later this morning about prescribing an augmentin also. I am heading out the door here to go pick him up. THANK YOU to everyone for the support- it really helped keep me from going crazy!

Dr K said he is supportive of putting him on augmentin and it sounds like we are going to forego the steroid burst and move straight to IVIG.

Oh how the tides can turn so fast , what an emotional roller coaster we all go through , pulling our hair out one day to celebrating the next and vice versa.

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I am so sorry your son and your family are living this horrible ordeal - it breaks my heart and makes me want to scream all at the same time... We have rage/meltdown issues with my DD7 - many times thought about admitting - even went to the hospital 1x... I pray daily we never get to that point again -

 

I pray that today will be a better day for your son and your family. You may not realize it now but you are remarkably strong - your determination to get your son well is apparent. You are on the right road.... you just hit a big ugly pothole! (the hospital) - Fight with the AMA - an attorney - whatever it takes... btw hospitals do not like bad press - I would call your local TV 'investigative reporter' - let them know that they left your child with PANDAS locked in a room to bang his head on an unpadded wall for an hour!!!! that should be enough to get anyones attention....

 

Lots of prayers and lots of hugs.

Steph

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