Major crisis - questions regarding going to ER!

[Stephanie2]

My 6yo has had severe rages on and off for the past 2 days. We are exhausted and nothing seems to bring it down (tried tenex and ativan and activated charcoal). We think it is related to the steroid taper plus some gut infections that the steroid is flaring. If we bring him to the ER tonight, what will they do? Will they inject him with something? Admit him? I have no idea what to do here...

[Kayanne]

My 6yo has had severe rages on and off for the past 2 days. We are exhausted and nothing seems to bring it down (tried tenex and ativan and activated charcoal). We think it is related to the steroid taper plus some gut infections that the steroid is flaring. If we bring him to the ER tonight, what will they do? Will they inject him with something? Admit him? I have no idea what to do here...

I don't have any advice....just wanted to say I'm sending prayers and thoughts your way.

[browneyesmom]

I'm so sorry, Stephanie. We have been there several times the last few weeks.... transporting DD11 to ER via ambulance.

 

I can't speak for what they may or may not do but I can share about our experiences and feel free to check my older posts about our ER trips.

 

I got some feedback here when they tried Ativan for her and it seemed to make her worse. Other parents posted that it could increase rages, a pediatric neurologist (not ours, but one in his practice) confirmed via the ER doc that the benzos like these can make it worse. They switched her to Risperdal instead and it has helped. I can't say that she does not have any episodes anymore; however, they are dramatically reduced & we are able to manage them at home.

 

After our third time to the ER, they did admit her to the hospital and that is where they started her on IVIG infusions - a change from the SubQ infusions she'd started just a couple weeks earlier.

 

I would suggest that you have phone numbers of any physicians who might be able to support you regarding PANDAS when you go. I gave phone numbers and asked them to consult... sometimes, called her regular docs too, to help connect them. I hope it goes well... please keep us posted. You'll be in my thoughts and prayers this evening.

[kimballot]

How is your relationship with your pediatrician? Did the pediatrician know about the steroid? I would call the "on call" numbers for the pediatrician and whomever prescribed the steroid to get some direction.

 

I will keep watching for your posts and I will be thinking about you.

Edited January 14, 2011 by kimballot

[Fixit]

Steph!!!!! I am so sorry!!!

Call the docs like suggested....

I will be on road tomorrow to llmd....i'll have alot of time!!!

[thereishope]

I agree with calling the emergency number for the peds office. Is he small enough that you can hold him down if he rages and gets out of control? Is he threatening to hurt himself? Because he's 6, I admit, I get nervous of the ER and PANDAS rages. My son was 5 and I had times when I thought I'd need to call an ambulance but I was so fearful they would admit him and I knew for my son that would be devastating and torture (especially if I would have to leave him) so I always road out the rages. He weighed only like 43 punds at the time, so I could restrain him.

 

Let's just hope it doesn't come to that decision.If you do take him, have anoterh adult come with you and take your time reading everything you are given before signing.

[Stephanie2]

Thank you all for the suggestions and support! It means so much to me on a night like tonight! Somehow dh got him to de-escalate and he is now in bed, not sleeping, but he is quite.

 

I'm so sorry, Stephanie. We have been there several times the last few weeks.... transporting DD11 to ER via ambulance.

 

I can't speak for what they may or may not do but I can share about our experiences and feel free to check my older posts about our ER trips.

 

I got some feedback here when they tried Ativan for her and it seemed to make her worse. Other parents posted that it could increase rages, a pediatric neurologist (not ours, but one in his practice) confirmed via the ER doc that the benzos like these can make it worse. They switched her to Risperdal instead and it has helped. I can't say that she does not have any episodes anymore; however, they are dramatically reduced & we are able to manage them at home.

 

After our third time to the ER, they did admit her to the hospital and that is where they started her on IVIG infusions - a change from the SubQ infusions she'd started just a couple weeks earlier.

 

I would suggest that you have phone numbers of any physicians who might be able to support you regarding PANDAS when you go. I gave phone numbers and asked them to consult... sometimes, called her regular docs too, to help connect them. I hope it goes well... please keep us posted. You'll be in my thoughts and prayers this evening.

 

I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital!

 

 

How is your relationship with your pediatrician? Did the pediatrician know about the steroid? I would call the "on call" numbers for the pediatrician and whomever prescribed the steroid to get some direction.

 

I will keep watching for your posts and I will be thinking about you.

No, the ped does not know about the steroid. I did not think to call her. Thanks Kimballot!

 

 

Steph!!!!! I am so sorry!!!

Call the docs like suggested....

I will be on road tomorrow to llmd....i'll have alot of time!!!

 

Thanks I may call but there may be tears this time!!

 

 

I agree with calling the emergency number for the peds office. Is he small enough that you can hold him down if he rages and gets out of control? Is he threatening to hurt himself? Because he's 6, I admit, I get nervous of the ER and PANDAS rages. My son was 5 and I had times when I thought I'd need to call an ambulance but I was so fearful they would admit him and I knew for my son that would be devastating and torture (especially if I would have to leave him) so I always road out the rages. He weighed only like 43 punds at the time, so I could restrain him.

 

Let's just hope it doesn't come to that decision.If you do take him, have anoterh adult come with you and take your time reading everything you are given before signing.

 

I can hold him down but he fights me so hard, a couple months ago I injured my neck "wrestling" with him...costed me $1200 at the chiro to fix it (I had a previous injury). I usually ride out the rages, but last night's was 4 hours and tonight I panicked and thought I WON'T LAST THAT LONG! I just wanted someone to inject him and make it stop!

Edited January 14, 2011 by Stephanie2

[AmberM]

My 6yo has had severe rages on and off for the past 2 days. We are exhausted and nothing seems to bring it down (tried tenex and ativan and activated charcoal). We think it is related to the steroid taper plus some gut infections that the steroid is flaring. If we bring him to the ER tonight, what will they do? Will they inject him with something? Admit him? I have no idea what to do here...

 

Stephanie, I'm so so sorry to hear things got so much worse. I'll be keeping your family in my prayers tonight. Hopefully this rage will pass soon. Is he complaining of gut pain.... I know you said the steroids seem to be causing some issues with that? I was thinking maybe you could take a break for a couple of days from anything that's not absolutely critical. I cut out Audrey's diflucan and vanco for today because she's not really eating and I thought that could be an issue. I also gave her mylanta mixed with the pred and things seem a little better. Audrey can't talk to me so I don't know if it's just coincidence or what. I just worry about what might happen in the E.R. DO you have an emergency number for Scott?

-Amber

[thereishope]

Believe it or not, my son had some rages come to a stand still if I turned on SpongeBob. He'd go from tearing my clothes, kicking,hitting to a trance in front the tv.I would pick him up and turn his face to the tv until he realized it was on!That was the first time my kids ever watched SpongeBob...now I can't get the darn show off the tv.

 

 

Thank you all for the suggestions and support! It means so much to me on a night like tonight! Somehow dh got him to de-escalate and he is now in bed, not sleeping, but he is quite.

 

I'm so sorry, Stephanie. We have been there several times the last few weeks.... transporting DD11 to ER via ambulance.

 

I can't speak for what they may or may not do but I can share about our experiences and feel free to check my older posts about our ER trips.

 

I got some feedback here when they tried Ativan for her and it seemed to make her worse. Other parents posted that it could increase rages, a pediatric neurologist (not ours, but one in his practice) confirmed via the ER doc that the benzos like these can make it worse. They switched her to Risperdal instead and it has helped. I can't say that she does not have any episodes anymore; however, they are dramatically reduced & we are able to manage them at home.

 

After our third time to the ER, they did admit her to the hospital and that is where they started her on IVIG infusions - a change from the SubQ infusions she'd started just a couple weeks earlier.

 

I would suggest that you have phone numbers of any physicians who might be able to support you regarding PANDAS when you go. I gave phone numbers and asked them to consult... sometimes, called her regular docs too, to help connect them. I hope it goes well... please keep us posted. You'll be in my thoughts and prayers this evening.

 

I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital!

 

 

How is your relationship with your pediatrician? Did the pediatrician know about the steroid? I would call the "on call" numbers for the pediatrician and whomever prescribed the steroid to get some direction.

 

I will keep watching for your posts and I will be thinking about you.

No, the ped does not know about the steroid. I did not think to call her. Thanks Kimballot!

 

 

Steph!!!!! I am so sorry!!!

Call the docs like suggested....

I will be on road tomorrow to llmd....i'll have alot of time!!!

 

Thanks I may call but there may be tears this time!!

 

 

I agree with calling the emergency number for the peds office. Is he small enough that you can hold him down if he rages and gets out of control? Is he threatening to hurt himself? Because he's 6, I admit, I get nervous of the ER and PANDAS rages. My son was 5 and I had times when I thought I'd need to call an ambulance but I was so fearful they would admit him and I knew for my son that would be devastating and torture (especially if I would have to leave him) so I always road out the rages. He weighed only like 43 punds at the time, so I could restrain him.

 

Let's just hope it doesn't come to that decision.If you do take him, have anoterh adult come with you and take your time reading everything you are given before signing.

 

I can hold him down but he fights me so hard, a couple months ago I injured my neck "wrestling" with him...costed me $1200 at the chiro to fix it (I had a previous injury). I usually ride out the rages, but last night's was 4 hours and tonight I panicked and thought I WON'T LAST THAT LONG! I just wanted someone to inject him and make it stop!

[Megs_Mom]

Oh Stephanie, I hope you find answers soon. We rode them out, but nothing ever lasted 4 hours - max was maybe 2. So I think you just have to know when it is an emergency. So long as he is not hurting you or himself, then you do have choices.

 

We also found that our daughter could calm a good bit with some "squashing" rather than my trying to hold her. We showed her this ahead of time & then asked her permission before doing it. She would lay on the sofa, and we would pile pillows on her & then lay very gently on her with some pressure. This had to be done at the very start, once it escalated, it would no longer be tolerable. We found holding her would make her worse (claustrophobia like reaction).

 

I hope it resolves very soon. You are such a great mom, and I know you will find answers.

[browneyesmom]

Thank you all for the suggestions and support! It means so much to me on a night like tonight! Somehow dh got him to de-escalate and he is now in bed, not sleeping, but he is quite.

 

I'm so sorry, Stephanie. We have been there several times the last few weeks.... transporting DD11 to ER via ambulance.

 

I can't speak for what they may or may not do but I can share about our experiences and feel free to check my older posts about our ER trips.

 

I got some feedback here when they tried Ativan for her and it seemed to make her worse. Other parents posted that it could increase rages, a pediatric neurologist (not ours, but one in his practice) confirmed via the ER doc that the benzos like these can make it worse. They switched her to Risperdal instead and it has helped. I can't say that she does not have any episodes anymore; however, they are dramatically reduced & we are able to manage them at home.

 

After our third time to the ER, they did admit her to the hospital and that is where they started her on IVIG infusions - a change from the SubQ infusions she'd started just a couple weeks earlier.

 

I would suggest that you have phone numbers of any physicians who might be able to support you regarding PANDAS when you go. I gave phone numbers and asked them to consult... sometimes, called her regular docs too, to help connect them. I hope it goes well... please keep us posted. You'll be in my thoughts and prayers this evening.

 

I was hoping you would chime in, I was following your posts with horror Thank you for the feedback regarding the meds, it really helps me to understand. I do think that he reacts negatively to the ativan. There was a time when it did help about 6 months ago, but this time I gave him a lot more and I just think it made him worse. Tonight we decided to forgo the ativan and the rage only lasted about 1.5 hours rather than 4 like last night. I have some risperdal here, maybe I should start it, but I think I will check with his pandas doc in the am. Wow, that is amazing that they started IVIG right there at the hospital!

 

Stephanie... I am so glad this one resolved faster! My heart broke when I saw your post. I too, had those rages with her that lasted hours and I actually started to think she might really overpower me - so strong she is, in the midst of them! She is 65-70 lbs and they only have her on 0.25 mg of Risperdal, twice daily. We are able to increase to 0.5 mg, if needed, but so far, it has not been necessary.

 

Inbox me anytime if I can help. I'm so sorry things are so tenuous there right now.

 

I so hope you are all able to get some rest this evening, although I know it is so difficult to sleep when so concerned, which just decreases our strength further. Please let us know what the docs say in the morning. We have another IVIG tomorrow, so may not be able to get online until late, but I will be watching for your updates.

 

Big hugs

[formedbrds]

[

Edited February 7, 2011 by formedbrds

[browneyesmom]

Stephanie, I forgot to mention about the IVIG she got. I had taken her to our Immunologist in October for testing as she had low pneumoccocal titers a few years ago. She tested deficient for IgA & IgG and he ordered Ig for her. That started a process of being approved at home for Sub Q as my initial understanding was that it was the same as getting the IVIG - I later learned it's a much smaller dose. We did 2 weeks at home and she was getting increasingly sicker - more rages & as you've read, lasted hours.

 

The day she was due for her 3rd weekly infusion, we wound up in the ER again. They did not do the IVIG there, but they did transfer us to a children's hospital (further away & under the care of a pediatric neurologist we'd seen about a year and a half ago) that did. The first day, they ran oodles of tests and the next night, they did the first hdIVIG, second one the following night - 1 gram each night for a total of 2 grams. That is where we are going now (yesterday and again today) for her 2nd set of IVIG infusions - receiving 0.5 grams each day this time, for a total of 1 gram. We see Dr. B on Jan 26 (I was able to move it up a little, thank goodness!) and I anticipate we will know more about her future infusions after that.

 

I don't know if being already approved for the SubQ Ig made a difference in her case. Her neurologist told me it would never be enough & she needs IVIG to get better. Looking back, I wonder if the SubQ gave her just enough boost to make her sicker as the IVIG is clearly helping... slowly, but it is.

[MichaelTampa]

So sorry it's been so tough. Glad it wasn't at least as bad this time as you were fearing. Sorry, no suggestions, but glad others have had some. Better days ahead!

[PhillyPA]

Start lifting. Get strong. Learn defensive moves and blocks. Eye of the tiger my friend. Eye of the tiger. I hold up my palms and let the kid punch away.