Pain meds during induction

[Guest guest]

Nate has been having pain on/off during induction. We started on July 9th and

had our 2nd round of chemo/bone marrow/spinal/IT last Thursday.

On Thursday night approx 8hours after chemo, he refused to walk, started

screaming, shaking and sweating.. I picked him up and he grabbed a hold of me

and dug his nails into my arm screaming. We cuddled on the couch for approx two

hours and things seem to subside. I know this isn't a steroid thing... seen

that too, this was so different.

I am a nurse and worked in PICU for 6 years and know a pain response when I see

it. I also know my kiddo and although I can be emotional I don't feel I'm over

reacting.

My docs don't want to give anything for pain and say if it gets really bad we

have to go to the ER.

I've heard that patients from Children's Milwaukee go home with Morphine during

induction.

I'm going to discuss this calmly and professionally with the doc on Thursday,

unless it gets worse again.

Any direction or advice would be great.

Oh, and Nate has a great pain tolerance.. he has suffered through many ear

infections and never has done anything like this... but I suppose this is

probably as bad as it can get.

[Guest guest]

Tania,

Welcome to the group.

My daughter is now 9 and was diagnosed with AML when she was 2. She was treated at University of Chicago. She endured 6 months of hard and heavy chemo and we are happy to say she is cancer free for 7 years now...Yippee.

Treatment is not a fun road trip at all, but our kiddo's are amazing and come out of it smiling in the end.

There are several families on the list whose child has ALL and would be better able to answer about the pain Nate is experiencing. The treatment course and chemo drugs are different for AML than ALL.

If you haven't already, get connected with the leukemia and lymphoma society. When was going through her treatments, they helped pay for gas, tolls etc. Don't know if they still help with that kid of stuff. The social worker at the hospital should be armed with this kind of info.

http://www.leukemia-lymphoma.org/hm_lls

From: Tania Kothera <taniabsn@...>Subject: [ ] Pain meds during induction Date: Saturday, July 18, 2009, 4:47 PM

Nate has been having pain on/off during induction. We started on July 9th and had our 2nd round of chemo/bone marrow/spinal/ IT last Thursday. On Thursday night approx 8hours after chemo, he refused to walk, started screaming, shaking and sweating.. I picked him up and he grabbed a hold of me and dug his nails into my arm screaming. We cuddled on the couch for approx two hours and things seem to subside. I know this isn't a steroid thing... seen that too, this was so different.I am a nurse and worked in PICU for 6 years and know a pain response when I see it. I also know my kiddo and although I can be emotional I don't feel I'm over reacting.My docs don't want to give anything for pain and say if it gets really bad we have to go to the ER. I've heard that patients from Children's Milwaukee go home with Morphine during induction. I'm going to discuss this calmly and professionally with the doc on Thursday,

unless it gets worse again.Any direction or advice would be great.Oh, and Nate has a great pain tolerance.. he has suffered through many ear infections and never has done anything like this... but I suppose this is probably as bad as it can get.

[Guest guest]

Sorry to hear about Nate's diagnosis and other prior complications. My son , 8 years old, has DS and was diagnosed with ALL in April, 2008. I remember being very concerned during induction because he did not walk at all during that phase. After about 4 weeks he started to use a walker and quickly started walking on his own again. The only pain medication at home he received was tylenol with codeine. During the DI phase, the pain was so intense, he was hospitalized and had a morphine drip. I do know some kids are prescribed morphine for home use.

I know it is all very scary right now. Your medical background should be a great benefit in your understanding of treatment and side effects.

I hope Nate responds quickly to treatment and his pain subsides.

Jo

[ ] Pain meds during induction

Nate has been having pain on/off during induction. We started on July 9th and had our 2nd round of chemo/bone marrow/spinal/IT last Thursday. On Thursday night approx 8hours after chemo, he refused to walk, started screaming, shaking and sweating.. I picked him up and he grabbed a hold of me and dug his nails into my arm screaming. We cuddled on the couch for approx two hours and things seem to subside. I know this isn't a steroid thing... seen that too, this was so different.I am a nurse and worked in PICU for 6 years and know a pain response when I see it. I also know my kiddo and although I can be emotional I don't feel I'm over reacting.My docs don't want to give anything for pain and say if it gets really bad we have to go to the ER. I've heard that patients from Children's Milwaukee go home with Morphine during induction. I'm going to discuss this calmly and professionally with the doc on Thursday, unless it gets worse again.Any direction or advice would be great.Oh, and Nate has a great pain tolerance.. he has suffered through many ear infections and never has done anything like this... but I suppose this is probably as bad as it can get.

[Guest guest]

was diagnosed with high risk Oct 2003 and was off treatment March 2007. He had a hard time with the early stages, and off and on throughout treatment. He did not have the pain symptoms you describe but could not walk and at one point could not sit. I think it was more fatigue and weakness than pain, but I'm not sure. also has autism, and he is mostly nonverbal and has a very high pain tolerance, common in kids with autism.

Beth

[ ] Pain meds during induction

Nate has been having pain on/off during induction. We started on July 9th and had our 2nd round of chemo/bone marrow/spinal/IT last Thursday. On Thursday night approx 8hours after chemo, he refused to walk, started screaming, shaking and sweating.. I picked him up and he grabbed a hold of me and dug his nails into my arm screaming. We cuddled on the couch for approx two hours and things seem to subside. I know this isn't a steroid thing... seen that too, this was so different.I am a nurse and worked in PICU for 6 years and know a pain response when I see it. I also know my kiddo and although I can be emotional I don't feel I'm over reacting.My docs don't want to give anything for pain and say if it gets really bad we have to go to the ER. I've heard that patients from Children's Milwaukee go home with Morphine during induction. I'm going to discuss this calmly and professionally with the doc on Thursday, unless it gets worse again.Any direction or advice would be great.Oh, and Nate has a great pain tolerance.. he has suffered through many ear infections and never has done anything like this... but I suppose this is probably as bad as it can get.