7upMom

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!

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 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!

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!!!

Just walking out the door now, will update when we get back from visiting him, I could only hope we are able to bring him home!

I checked on AMA and it said you have to give them 24 hrs notice that you are going to do this ( reasoning for this is it gives the dr time to get a court order if he feels it necc) which worries me it would bruise an ego and then try to do a court order "just because" plus it also said if you AMA insurance can refuse to pay for any subsequent visits for that condition from that point on. This worries me - I worked as a jailer for almost 10 years and we did court committals all the time for transports- I know from a behind the scenes look- pissing them off can make it way worse! At 9 my son is keep your head down, mouth shut, and wants me to do the same because he said it is easier for him in there. UGH ) : that is heartbreaking to hear. Still waiting to hear from Dr K on this, but sent him another email letting him know the doc there will be in contact with him about possibly a stronger antibiotic!

Ok, I am getting really flustered here. I called the hospital where he is at Again! since I still hadn't heard back. I got quite the runaround, until I got very pushy about not hearing anything about my son and how wrong this was. Finally got on the phone with the nurse , She said he was doing great and being very respectful, he had lost freetime due to behavior from last night, but had earned most back and other than that was complaining about a headache and doc didn't note a plan down for him so thats all she knew. I asked what his "behavior" was that he got free time taken away, she said he was placed in the quiet room because he was upset when he came in ( yes he was CRYING- his rage was over that was the ER at the other hospital) and that he was disciplined for his behaviors he had at home and for coming in on the same day he was discharged!! WHOA- I asked her how they could discipline my son for this? she said they do this at times and thats what they did. I told her I did not agree with this at all and wanted to know when he would be getting out, I told her he had PANDAS and was brought in to be safe for the night, not a longterm stay that wasn't going to resolve anything, so there was no point in keeping him there, so he could once again hold it all in and then rage in another 5 days. She went round and round with me, that the doc was out, she couldn't do anything didn't know etc. Finally got transferred to the case manager- she apologized profusely for not calling me earlier ( she had a busy, long day) I told her to join the club on that one! She said that there is no plan right now for him because he's off those meds, there is nothing they can do for him so what do they do- they don't know- I told her to please have the doctor give him augmentin in place of the penicillin and could even consult with Dr K on this if need be as this had much better results than the penicillin and this could get us through for now. SHe was going to check into talking with the psych on this. She called back and the psych said he was much too busy to do it today and didn't know when he would get to it tomorrow but would check on it when he could. I asked her why he couldn't come home at this point since it was just to keep him safe for the night, she answered circles around that one and got off the phone. I spoke with my son after this on the phone and his rash he says is worse, they haven't checked on it once and I told him to tell them ( he said he doesn't want to make them angry so he is not going to ) : then remember she said he was complaining of headache - they didn't do anything for that either. So just curious what can I do here, I want my son out and home where at least he can be comfortable. Any suggestions on this??? Leave in about an hour to go visit him

I am so happy for you that he is doing good and will truly celebrate the day I can say the same!!! It is so hard to think of him being in there, scared and lonely. I wanted to just go ama so bad with him last night, and regret not doing it . Its a horrible thing, when you are in the midst of it, you feel like there are just no options, its what you have to do for him to be safe and then as soon as he is there, I think no why did we bring him in, we can do this at home. UGh, its enough to make you feel crazy. I suppose they deal with some parents that drop their kid there and think of it as a break, but I'm not that parent, I don't think any of us on here are, so when I can't even get the dr from there let me know how he is doing, what the plan is, or anything -but yet don't want to burn bridges with someone that can help him. I am just so frustrated. Am waiting to here back from the bank today and that stress is killing us too, but nothing compared to what he is going through I'm sure.

He is 73 lbs, he is on tall/lanky side Thats a good idea too!! Unf am also waiting for him to call back too, called and left message for him ( he was doing rounds) at 1130 - nothing yet, but think I am going to try again. Fortunately- he has spoke with Dr K a couple different times ( thankyou to another mom on here for preparing the way for others with that ) and is on board with Dr K so if I could just get ahold of either one of these two I will talk with them about a better antibiotic!

I have a message into him ( Dr K ) and am waiting for him to get back with me- I will ask about the antibiotic when he does this. Thanks for this advice- this has made me hopeful again and maybe this and the ibuprofen every 6 will put us back to manageable! I do have a 10 day script of cephalexin 250/3 x's a day for him from a doc here at home in case he did have a positive strep. Is that a strong enough to do any good?

YES- we do the very silly thing on the other end of it also. Theres not much for middle ground, its either really high or really low. SO a different antibiotic other than the penicillin? Does that interfere at all with the steroid burst we are going to do in 2 weeks?? It would be hard to not have the apology part ):

He takes penicillin 250 twice a day, has been on that for 1 1/2 yr off for about 6 months and has been back on it for about 4 months now. His aso's are always fine, in Oct/Nov his dnase titers were 1360+ and then Dec 720 , then Jan 1360+ and then last week 680. They told me they will put the ibuprofen down "as needed" for him. His psych who is the director there, is onboard with Dr K so we are very lucky there. He is currently now completely off the lexapro and abilify but as far as the rages- I don't think its from him coming off those meds because he was raging like this before he went in to get off them. I think prob a good half of them seem to be understanding it- last week they told me its hard because they are so used to preaching "being respon for your own behavior and actions etc, but in his case they understand there is something else controlling that and don't want to be too hard on him" Then you get a nurse like last night when he came back in she looked at him very condescending and snarly about him "throwing a fit" and coming right back in. Well, by this time he already had enough of his own guilt, he didn't need hers, he started crying all over again when she did that. I was not a happy mom at that point. I'm have tempted to clear out a room in my house, pad the walls up and just call that our chill out room away from the little ones and he doesn't have to go back in there, but yet its one room that could have 50 holes in it if it had to be. Geez, Dr K was right, we are adapting critters !!! Thank you so much for the prayers, we are really in need of as many as possible. your right though- we will get through this and it will get better, I just wish that was sooner than later

Just wanted to give an update on DS 9 - it has just been so chaotic have not been able to catch up. Went to Chicago and saw Dr K, last Monday, very informing visit, would highly recommend this to anyone- and I was very nervous about going. He was very intuitive and was able to tell me almost to the "t" about my son, after years of learning I can't trust a "doc" in this, I quickly learned I could trust he knew what he was doing and what we were going through! The plan was this 1. wean off the lexapro, abilifiy ( clonidine was ok for him to remain on) also test for mycoplasma pneum. 2. Wait two weeks after off these meds then begin 5 day steroid burst 3. After steroid burst, wait 2 weeks and evaluate 4. Option if good response to steroid burst proceed with IVIG, then highdose augmentin after for 1-3 years He advised at this age and the symptoms presented he would have a cure rate of approx 92% - very good news for us, we all coulda bear hugged and kissed him! We had a plan! YES! a plan! and good, gives us time to refinance and pay for this also. Upon returning home, all ###### just broke loose- He raged for 3 days straight morning to night- we held him down for 20-30 min increments prob 5-6 times each day. There was spitting, swearing, punching, threats on himself, threats on us, throwing anything, slamming his head on anything, smearing himself in spit and snot- IT was horrendous to watch, and then we have two sets of twins ( 6 and 4 ) that are in the midst of this also. We videotaped this, it looks like its out of a horror movie. By day 4 he woke up feeling a lot better, even made it to school ( WOW) had psych appt to wean him off meds- but they wanted him to stay and 9 y/o said I will do it cause I just want to get better, so he stayed. After 3 days there, he broke out in a rash, 4th day- still a rash and upon a visit he was trying to hold in a rage so bad ( I talked with staff about how I was worried that after so many days of holding this in , I could see it and this did not bode well for bringing him home) I was told obv then he can "control" it. I explained its not a matter of "control" but containment for a period of time- because eventually it comes out- its just a matter of when. Day 5 ( yesterday) he was discharged. We were so happy to get him home, and he was so excited and happy to go home. 5 minutes after walking in the door, he managed to scream at the dog, his little brothers for looking at him, it went downhill from there no matter what I tried to do for redirection with him. He would scream at me, run to his room, come back out and cycle all over. He tried so hard to contain it , but 5 days of anxiety built up - it was going to come raging out and that it did! He tried to throw himself down the stairs, rammed his head into the wall, tried to break his fingers, bit his arm, leg, fingers anything he could get in his mouth including us, punched, kicked , spit, swore you name it. He urinated on himself and thats when I called the discharge helpline, she was listening to what he was screaming about on the phone- I interpreted for her_ he says he is going to F*&^ stab himself with a fork in his throat,- OH she said ok sshhh, I'm listening- Ok - now he says all you F*&^ people at the hospital are F*&^&^ A*&&^^^ Oh she says , take him to the closest ER right away that child needs medicated. UGH! Felt there was no choice 20 min later we are wrestling with him in the vehicle and could barely get him there 20 min away- he fought with staff , they had us hold him down in the room ( geesh coulda stayed at home and done this was my thinking) an hour later, they were taking him to the hospital an hour away and inpatient again as of midnight last night by the time we got there, he was Him again, he was apologizing and said he was so embarrassed and so sorry. He begged to come home, he said he hates it there, he is scared to be there, scared of them, just scared. His dad called this morning and he can barely talk to us, says they put him in the "quiet room" and he just couldn't talk. My heart is ripping out here, his dads heart is ripping out. All we can do is just cry we feel so helpless. His dad explains it like this- most kids that are this sick have wires and tubes and you know they are sick - but with him its so hard, theres no wires or tubes, but we are losing him just the same. Each week its worse, how will it be in a month- I am afraid to know. No damage to the brain?? Right now- my answer would be yes over years of going untreated YES, that is what we have right now because our child does not swear, he is loving and sweet and smart and funny. He would help anyone do anything and we don't see him very often anymore, instead he is spacey and trapped inside, he is raging and swearing and violent - and we are helpless! Psych doc has yet to return our phone call to see how our son is, reg dr says not much she can do, have an email into Dr K for help. We feel so stuck

Faith, When you ask for a copy of you child's labs - are you asking when they are doing them and asking the lab to send you a copy? This seems like such a simple thing- send me a copy, but the other day they gave me this HUGE runaround about getting a copy of the labs they were drawing. So now I have to go through the rigamaroll of going in later, signing their form then waiting for them to get around to sending them - pathetic ( I'm still waiting on one dr's office records and I mailed their request form in 3 months ago) I can't believe they won't just let me do it right on the spot.

Dawn, Sorry and happy for you at the same time that you are going for a 2nd IVIG. I knew you were thinking about it so I am really praying for you guys - I know this will get better for you!! BTW- ( : done with the ped we had and found a different one that is way on board with everything going on here. I am hoping for a month of big progress! Ginger- sorry I didn't answer you earlier on the other post- packing like crazy for all the munchkins that live in this house lol and trying not to have a nervous breakdown while doing it Love the idea of a face to face support group- just don't know if I could really make the physical commitment. We are usually going in one direction or the other here- a pretty full house from 17 to 4 and any of my spare time ( oh wait I don't know what that is lol) Glad to hear from another Iowan though-sorry about the circumstances why. Chel

Just heard back from Dr K- ( : He said they never close and if someone can come from 300 miles he can surely come from 1 1/2 miles!! See you on Monday! ( : Thank goodness for good doctors!! Thanks for the advice on emailing him !

We did the same thing when we got our sons file. We didn't realize the length and amount of the past history , I think you get used to a norm with your child and then don't realize how different that is from "normal" until its in front of you. Very good suggestion, we do this now! It would have helped us out a lot to have been doing it the whole time!

OH thank you!! I am already anxious and nervous enough, so that really helped calm my nerves down. I sent an email so we'll see, but just feel alot better after reading this! Actually where I am in Iowa LOL everything shuts down all the time- its just really rural where we are lol.

Thank you - I will try that!!! I might just be getting too worried ) : its not like its gonna dump 10 inches in an hour lol, so hopefully it will hold off long enough we can be seen. Thanks again

I called the office and got their messaging lady. She said it wasn't snowing there right now so - so far their office was open on Monday - um ok lol- I told her that it was forecasted for Monday so it prob wouldn't be snowing right now lol- but did she know their protocol for bad weather. She was not sure but said that normally most Chicago businesses stay open and in a really bad storm would just close early ?? she told me there was really no way to get ahold of anyone and ask or find out until Monday am rolled around. Does he email back on weekends??

We are supp to leave Sunday morning for Chicago to see Dr K monday at 1130. We are driving from Iowa and they are forecasting a pretty big snowstorm tomorrow. Thats fine for us, we don't have a problem going anyway and driving in it , BUT- they are also forecasting 10 inches for Chicago on Monday- so its Sat I can't even call their office and ask what they usually do with a snowstorm. Do they cancel their appts or now? I would not want to drive all the way there, pay for a hotel room, food etc, just to find out they shut their office down for the day and vice/versa I would hate to stay home and find out they stayed open and arrange everything again ( day off work/ younger kids to overnight/ dog to kennel etc- and just the length of time- it has already seemed forever and don't think we want to wait a day longer with the way things have been going. Does anyone know what their office usually does??

He wants me to go to my doc here(i thought he could do it too) luckily, which is why i went to my ped yesterday to try to get a head start on a doc working with us...also my endo is an out of the box thinker, but more with endo stuff and not too peditatric but i believe will help me where he can..so yah try to find a willing doc where you are. 60-80 is what he said.... wow- I would be in a huge bind, I can't get a doc on board about doing anything outside of what they think here. UGH, thats a good heads up- thanx, I am really glad for you - you have a doc that will do that!!!!

I am not near exp enough with the treatment part to give any advice on the antib, I am still in the learning/questioning stage also. We've never tried anything other than amoxic and penic and neither of those have worked at all here. So did he prescribe those for you, will he if you want him to , or do you just get his treatment plan and then take it home to your own doctor?? Thats the part I don't understand. Do you just go in and hear their suggestions or do they actually do the treatment too? I know they do the IVIG but what about the inbetween stuff? I feel so bad for you with the confusion , don't feel alone though, cause wow I think its really confusing too. 60-80% chance of working with the IVIG is what he said? I thought it was supp to be more than that?

Chemar, If one has a family history of t/s and ocd and tics don't wax/wane how are you supp to know 1/ if its t/s or Pandas and 2/ if its tics from tourettes or ocd type tics ?

Fixit I know you are ? the burst right now, but do you think your ultimate goal is the IVIG after your visit today with Dr K? Or do you feel more confused now?