Need help NOW

[Megs_Mom]

Oh my heart breaks for you. I cannot offer advice beyond what has been said here, but agree that if this were my child I would get Augmentin XR if at all possible.

 

I know how you feel about losing your child - and our situation was not as bad as yours. We will be thinking of you both.

[colleenrn]

How much does your son weigh? Unless he is very light for a 9 year old, cephalexin at 250mg 3x/day is a lower dose.

 

Is he still inpatient? If so, you can deal with his attending physician at the hospital and bypass Dr. K if you do not hear back from him. If you have to do so to get him on antibiotics today, tell the hospital that you just found out his close contacts recently were just diagnosed with strep and you want him on zithromax or high dose Augmentin today.

Colleen

[dabel]

I am so sorry that things have continued to spiral out of control for your son. I hope that you take some comfort in knowing that you have done and are doing everything you can to help him. The waiting is so hard! My son, as you know, went through many long term bouts like this. You do feel helpless and frantic! Atleast now you know that you are on the road to getting him better. Dr.K will is probably the best around and he will help your son. Waiting around and going through the process stinks! I agree with many of the others comments and would definately switch his abx. The psych you are working with is familiar with the high dose used for these kids and maybe he can just order it since your son is there. Please feel free to call if you need to talk...this is one tough journey. There is hope though.....my son is 3 months out from the IVIG and is doing very well! You will be there soon too. Hang in there!

 

DeAnn

[7upMom]

How much does your son weigh? Unless he is very light for a 9 year old, cephalexin at 250mg 3x/day is a lower dose.

 

Is he still inpatient? If so, you can deal with his attending physician at the hospital and bypass Dr. K if you do not hear back from him. If you have to do so to get him on antibiotics today, tell the hospital that you just found out his close contacts recently were just diagnosed with strep and you want him on zithromax or high dose Augmentin today.

Colleen

 

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!

[7upMom]

I am so sorry that things have continued to spiral out of control for your son. I hope that you take some comfort in knowing that you have done and are doing everything you can to help him. The waiting is so hard! My son, as you know, went through many long term bouts like this. You do feel helpless and frantic! Atleast now you know that you are on the road to getting him better. Dr.K will is probably the best around and he will help your son. Waiting around and going through the process stinks! I agree with many of the others comments and would definately switch his abx. The psych you are working with is familiar with the high dose used for these kids and maybe he can just order it since your son is there. Please feel free to call if you need to talk...this is one tough journey. There is hope though.....my son is 3 months out from the IVIG and is doing very well! You will be there soon too. Hang in there!

 

DeAnn

 

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.

[tired mom]

I am so sorry that things have continued to spiral out of control for your son. I hope that you take some comfort in knowing that you have done and are doing everything you can to help him. The waiting is so hard! My son, as you know, went through many long term bouts like this. You do feel helpless and frantic! Atleast now you know that you are on the road to getting him better. Dr.K will is probably the best around and he will help your son. Waiting around and going through the process stinks! I agree with many of the others comments and would definately switch his abx. The psych you are working with is familiar with the high dose used for these kids and maybe he can just order it since your son is there. Please feel free to call if you need to talk...this is one tough journey. There is hope though.....my son is 3 months out from the IVIG and is doing very well! You will be there soon too. Hang in there!

 

DeAnn

 

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.

[tired mom]

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

You mentioned that your son had broken out in a rash. Could it have been hives?? This past fall I noticed a change in my daughters symptoms and she was breaking out in hives. The doctor ordered bloodwork and she came back positive for mycroplasma p. If he was not checked yet have them do the bloodwork. Good Luck and God Bless!!!!

[Doug]

Oh My,we are so sorry,it was breaking my heart just to read it,I am glad that it went well with Dr k,he is awesome

call me anytime I think you still have our #.

We will pray for you and your family,and we pray for all of us.

Doug&Tracie

[wornoutmom]

My heart is breaking for you. I remember how horrible and helpless and guilty I felt when we had to admit my son to the hospital at age 12. Reading your post I could just feel the emotional rollercoaster you are on with having such hope and then the real situation in the here and now being so scary and horrible. I have ridden that rollercoaster for a very long time and know how hard it is. You are amazing parents for trying to get your son all the help you can in all the ways you can. I hope you can take some peace in knowing he is safe for the moment. You are in my thoughts...

[7upMom]

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

[tired mom]

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 a little confused here. If you signed him in can't you sign him out. What are they actually doing for him. Taking away his free time as a punishment is insane. If consequences worked for for these kids don't you think we as parents would do that. The mentality of some of the professionals in the psychological field angers me. These children cannot stop the rages and they should not be felt to feel that they have been bad. Do they think he acts this way because he wants to? Sounds to me like someone in that hospital needs a slap in the head.

[colleenrn]

I hope I catch you before you go!

 

I am a registered nurse and worked in a psychiatric hospital for years, specifically with children and teens.

 

What the nurse is telling you- that she can't contact the doctor, is a huge load of BS. A physician is on call 24 hours a day. You can and should insist he or she be paged and that you are not leaving the hospital until you talk to the physician.

 

The head ache and rash could very well be from strep. Along with his increase in PANDAS symptoms, I am definitely thinking he has strep. My daughter had strep that penicillin never got rid of. No matter how long she was on it.

 

If your son is not a danger to himself or others and you can deal with him safely at home, IMO, take him home tonight. If they won't let you take him home, sign him out AMA.

 

He needs to start a different antibiotic at a higher dose asap.

 

If need be, get Dr. K on the phone with the hosptital tonight.

 

I am praying for you . Just be strong and demand what your son needs regardless of what anyone in that hospital says to you.

 

Colleen

[colleenrn]

One more thing.

 

In Virginia, and I assume it is this way in most states, the ONLY way they can hold you against your will if is you are a danger to yourself or others, in which case they do a TDO (temporary detaining order) and a magistrate has to hear the evidence and then decide if they have enough reason to keep you. IMO, there is no way they can keep your son tonight.

[7upMom]

I hope I catch you before you go!

 

I am a registered nurse and worked in a psychiatric hospital for years, specifically with children and teens.

 

What the nurse is telling you- that she can't contact the doctor, is a huge load of BS. A physician is on call 24 hours a day. You can and should insist he or she be paged and that you are not leaving the hospital until you talk to the physician.

 

The head ache and rash could very well be from strep. Along with his increase in PANDAS symptoms, I am definitely thinking he has strep. My daughter had strep that penicillin never got rid of. No matter how long she was on it.

 

If your son is not a danger to himself or others and you can deal with him safely at home, IMO, take him home tonight. If they won't let you take him home, sign him out AMA.

 

He needs to start a different antibiotic at a higher dose asap.

 

If need be, get Dr. K on the phone with the hosptital tonight.

 

I am praying for you . Just be strong and demand what your son needs regardless of what anyone in that hospital says to you.

 

Colleen

 

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!

[7upMom]

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!