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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.

I am so glad he can leave the hospital. I know you are relieved. But, per the threads above the hospital dropped the ball on this one...my opinion.

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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

I am far away and cannot see this child but I am still worried about his head!!!!

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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.

 

 

Good!!! Sounds like you have marching orders from Dr K which hold much promise at this point--

 

Augmentin XR twice a day, so a total of 2000 mg, is what our 65 lb. child is on, and it helps.

Be religious about the timing of it and give with food to avoid stomach upset (you don't need one more thing to contend with--)

 

I hope and pray this turns around for you.

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I'm glad he's coming home! Keep up with the Ibuprofen right now in hopes of easing rages.

 

Jot down everything that has happened along with number of calls, what was said, etc so you can file a report against that psych! Print out this thread too so you can have a timeline in case you forget anything. It's up to you, but I would fire that psychiatrist and file a complaint.

 

Even as simple, as them saying they ran out of Ibuprofen. It's a hospital! They don't run out of Ibuprofen!

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Checked him out without too many problems, surprisingly ( not) they didn't give me an evaluation form this time to fill out hhmmm. But upon the discharge instructions, which of course are not done by the dr and I still have not spoken with him, they advised meds penicillin and clonidine. I asked her if they had contacted Dr K about the augmentin and she said she wasn't sure. I went back and forth with her about it for a long time and then said well, can you go check with someone so I don't have his regular doc do something that he has already done because you wouldn't go check. She reluctantly did this, came back and said he is picking up the phone right now to call. She told my son to put his coat on and then went to let us out. I said, well how am I supp to know what he decided on this? She said we will prob give you a call.

I was very surprised when 20 min later they did call and did order the augmentin 875- twice a day in to the pharmacy. I guess the persistance paid off!

The whole thing was very weird though, and I can def say he will never be going back there!! Have not had a lot of downtime since we got home, he has been pretty high maintenance, and just very high anxiety- extreme silly and two year old type behavior going on but VERY exaggerated. Don't really know how to explain it, but suppose its just been pent up emotion and its coming out- which is fine I will def take that over the selfharm/ violent stuff!

I am really curious to see how the augmentin works for him! and have been giving him ibuprofen also

Thank you again to everyone for all the support through this! I may not have answered everyone back like I would have liked to but it all meant a lot and really got us through!

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Checked him out without too many problems, surprisingly ( not) they didn't give me an evaluation form this time to fill out hhmmm. But upon the discharge instructions, which of course are not done by the dr and I still have not spoken with him, they advised meds penicillin and clonidine. I asked her if they had contacted Dr K about the augmentin and she said she wasn't sure. I went back and forth with her about it for a long time and then said well, can you go check with someone so I don't have his regular doc do something that he has already done because you wouldn't go check. She reluctantly did this, came back and said he is picking up the phone right now to call. She told my son to put his coat on and then went to let us out. I said, well how am I supp to know what he decided on this? She said we will prob give you a call.

I was very surprised when 20 min later they did call and did order the augmentin 875- twice a day in to the pharmacy. I guess the persistance paid off!

The whole thing was very weird though, and I can def say he will never be going back there!! Have not had a lot of downtime since we got home, he has been pretty high maintenance, and just very high anxiety- extreme silly and two year old type behavior going on but VERY exaggerated. Don't really know how to explain it, but suppose its just been pent up emotion and its coming out- which is fine I will def take that over the selfharm/ violent stuff!

I am really curious to see how the augmentin works for him! and have been giving him ibuprofen also

Thank you again to everyone for all the support through this! I may not have answered everyone back like I would have liked to but it all meant a lot and really got us through!

 

7UpMom -- I wish I could just reach out and give you a big hug! You are doing such a great job with your son and someday he will realize exactly how wonderful you are!

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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.

I just finished reading the whole thing, what an ordeal! You must be exhausted by now. Hopefully the new abx will do the trick. I do believe your son had strep or something else (where was the rash anyway?)

I would say even if you are headed for IVIG, it might be worth doing the steroid burst just to bring symtoms down until you get there. Our son is doing very well on Augmentin XR, and the steroids brought him back 99%.

I would be a good idea too (when you've rested a bit) to get family members checked, just in case (all of my son's set-backs where due to his siblings having strep, which sometimes goes unnoticed).

But for now get some rest, give your son all the support and affection you can, and we'll keep praying for him and your whole family.

Hang in there!

 

Isabel

 

PS: probably not a priority right now, but I would document all that went on at that hospital, get a copy of the records from them, and make sure someone takes action so this does not happen again to anyone!

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I just wanted to wrtie to 7-up MOM- I have been following this for a few days- and I am so sorry for what you have gone through. My 11 yo dd sounds almost exactly like your son- she is essentially non-functional about 90% of the time due to her rages. She has never been strep positive- but thankfully I have a relentless and willing doc who is doing anything and everything (and I am not talking about our psychiatrist)

She has been on multiple psych med for almost 18 months with no effect. We are considering a riluzole study at NIH & went for a consult at Johns Hopkins recently with Dr grados- he recommended she be treated as if she ahd tourettes- I was so excited to start clonidine- but she will nto take it anymore. We are starting a very low dose steriod trial and then if that goes ok a 3 week trial next week. This is our first attempt at steriods for her. She is so "atypical" as our psych says- and so severe- but sorry to say- glad to know I am not alone.

Anyways- my regular psych is running out of options and your post has reinforced why we need ot keep her out of an inpatient setting. when I ask what they will do - I am told they work on her medicine and extensive therapy.. What on earth are they thinking???

If 18 months have not been enough to figure it out- how is a week or 2 inpatient going to help? and therapy--- how to you do this with a child who screams and trembles most of the day?

she does have perfectly normal sweet times, by the way.

has ANYONE had a helpful inpatient experience?

we are not really considering it- your dreadful experience is a testiony to what you have said- we can keep our precious children safer at home

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IShe has been on multiple psych med for almost 18 months with no effect. We are considering a riluzole study at NIH & went for a consult at Johns Hopkins recently with Dr grados- he recommended she be treated as if she ahd tourettes-

 

emuls -- i wish you good thoughts for finding help for your daughter. you may wish to search johns hopkins and dr harvey singer on this forum so you are familiar with what others of us have experienced from johns hopkins in relation to pandas. not at all suggesting you should not persue that but just that you should be aware of what others have gotten there.

good luck.

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