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  • NO PAIN RELIEF FROM TRIAL IT PUMP..Shoreline..

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    Old 10-07-2005, 08:54 PM   #1
    CoffyDrinker711
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    Unhappy NO PAIN RELIEF FROM TRIAL IT PUMP..Shoreline..

    Actually horrible sadness, my son has been in hospital for five days now, a dilaudid and clonidine cocktail has brought his pain levels down from a daily 7-8 with p.o methadone/whatever else they perscribe to a dismal 5-6. And that's with 2mg dilaudid ivp. every 6hrs or so.
    Docs don't want to use bipuvicaine and see no reason to use baclofen, mso4 didn't touch him...they don't use fentanyl....
    Please pump people, what did it take for your pain relief and what drugs are you on? As far as I know, this is it, back to oral meds. Is there anything else out there????

     
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    Old 10-07-2005, 10:18 PM   #2
    Shoreline
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    Re: NO PAIN RELIEF FROM TRIAL IT PUMP..Shoreline..

    Hi Coffee, How much time and titration have you given each dose increase? They started my pump at 1/6th of the amount of morphine it eventually took to manage my pain and it took 6 months and 16 adjustement to get there.

    It was pretty miserable for quit a while and it took 16 adjustments over 6 months to find the right dose and schedule.1/6th is along way from the target but IT was enough with the BT meds not to go through withdrawal. They did do a couple quick initial increases, 3 or 4 days apart to get to 6 mgs but then it was every week then every other and trying to maximize it's capability.

    If He's not getting relief most likely the dose is simply too low and even after a few increases they aren't getting close. If I had given up after 6 or 8 increases I would never have reached a level that gave me more relief and was tailored to may daily pain pattern with 4 different delivery rates throughout the day. But you don't even make it too the fine tuning if you landed in the parking lot rather than ballpark when they started with an initial dose.

    There are conversin rates but there job is to do it safely for everyone and then the dose can be asdjusted. If he's inpatient they can do dose increases every 12 hours, if they have to go 25% at a time that's a large increase for IT meds, It may even take longer to see results of a new med or increase because it takes anywhere frm 6-18 hours to reach the spine from the pump, dependning on the length of the cathater. I imagine a child would be quicker.

    I'm sorry this is going on and I don't recall all the detals and why your child is in the hospital. If things get uncontrollable, they can use anesthesia like ketamine and simply knock him out untill they figure out the conversion, They can increreas a dose while he's alseep and monitror respiration and BP before they wake him. Perhaps that would give him a chance to reach a dose that works.

    I feel horriable being a parent, I would be asking for anesthesia if he's in the pain you describe. It can be done safely, something similar to twilight sedation for minor surgeries and they can keep him sedated untill they see a negative effect from the an opiate increase as far as dose raleted BP or pulse issues, then they back off a little and wake him up and can put him right back under if needed. They do have the technology but not the agressiveness. They can even monitor brain wave activity with a BIS machine if they have to sedate him.

    I just hate to think of of a child suffering. But it takes time to find the right safe dose, but they do have the means on hand to reverse a dose if it's causing negativge effects. It's called Narcan. It wakes addicts up from OD's everydayso they shouldn't fear large increase to manage his pain if is present dose isn't touching the pain.

    Ya gotta be his advocate and the greasy wheel or screaming wheel , will get the oil.

    Can you remind us what's going on. Acute can be treated agressively and so can chronic but I'm not sure why he's in pain and what the DX is.

    Good luck and take care, Dave

    Last edited by Shoreline; 10-08-2005 at 12:13 AM.

     
    Old 10-08-2005, 08:41 AM   #3
    CoffyDrinker711
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    Re: NO PAIN RELIEF FROM TRIAL IT PUMP..Shoreline..

    Good morning and thanx for the reply Shoreline...
    My son is 24 and s/p proctocolectomy 3 yrs ago from something called fistulizing Crohn's disease, the worst manifestation of Crohn's. Abscesses tunnel into the intestine, pelvic muscles (his case) and wreak havoc. Poor medical management from his GI team along with surgery has put him in this condition. He describes his pain as "sitting on a hot railroad spike up your butt".
    He has taken every kind of pain med possible; this is the fourth or fifth pain clinic and they are aggressive. As far as med titration goes, well, they have been titrating meds up 12-24hrs; his pain will temporize then bounce back into the 6-7-8 end of the scale. It's only been five days with the pump and the docs aren't encouraged, I keep asking for more drug options. I'm wondering why methadone isn't used in pumps; my son's pain control is best on methadone. My plan is to ask today. Prialt has already been offered; an RN was quite frank with us last night and told us another pt. is on a Prialt trial and not having a good time of it. The pt. was asked if we could talk to her about her experience with Prialt and she agreed (no confidentiality breach). Again thanx for the replies and the support I appreciate each and every one of you and keep you all in my prayers.

     
    Old 10-08-2005, 09:21 AM   #4
    Shoreline
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    Re: NO PAIN RELIEF FROM TRIAL IT PUMP..Shoreline..

    HeyCofee, The only meds they put in the pump are ones that can make preservative free, For whatever reason liquid versin of meth would rewuire a preservative to saty fresh in between refill times which may range from 30 ays to 180 days with the new larger pmumps with 40ml resevoris. As far as opiate options It's morphine, dilaudid, febntanyl, suffentnayl and maye carfentnayl and afentanyl. Prialt is an option but has alot of psycho genic side efects like ketamine, hallucinatons, psychosis and other nasty side efects were seen in about 20% of the patients they used it on during clinical trials.

    It sounds like with the level of damage caused by chrohns he has a lot of nerve pain which may be better managed by the scs or more invasive surgery to implant a Vega nerve stim or even deep brain stimulator.

    Prialt is an option but it does carry the risk of some nasty side effects and the docs using it need to have some exeperience with it to combat the potential side effects.

    What makes meth particularly effective on nerve pain is it's NMDA receptor blocking ability, you can get even better NMDA receptor blocking with the new oral Alzheimers med Nemanda, you might ask about it and see if it's an option, but during a trial, throwing something like nemanda may really cloud the trial results. They wouldn't know if the relief was really from the pump or from the addition of oral nemanda, making it unclear if the pump is worth using or if simply adding nemanda to his oral meds would provide even more NMDA receptor blocking raising his threshold to pain and decreasing his tolerance to opiates making them more effective.

    I had to do 2 trials because the first trial failed due to a spinal fluid leak which blurred all results with a spinal headache and the vomitting associatd with it. I do hope they get his pain under control either by DCing the trial and going back to meth or by changing meds to something more effective. What have they tried so far and do you know what dose he's reached as far as the trial and what dose of meth he was on prior. They had me dscontinue meth completely for the trial to get an acurate readng and he may even be exeperiencing some differential withdrawal, because other opiates don't have every quality that meth has, particluarly NMDA receptror blocking.

    They did tell you they aren't looing for complete pain relief with a pump, 50% relief is what is considered a succesful trial and succesful management of a pump, I have never dropped below a 5 with any med so I use a 5 as my 50% relief mark. If they switch my meds the goal is to get my average level of pain down to a 5, it still leaves me disabled but able to cope and function well enough to have some quality of life.

    Pumps are just advanced tools, not cure alls. If he was expecting to reach a point of total relief, that just isn't the goal of a trial or use of the pump. Expectations are a big part of being satisifed with your pump. They can add meds like clonodine and baclofen which both can add to the anelgesic effects of an opiate or add small amounts of numbing agnets like bupivicaine but throwing those into the mix bfore they have reached that 50% point, again using other meds kind of skews the results oh how well opiates delivered IT actually work.

    There is also the posibility of misplacement or dislodging of the cath if he's been thrashing about. They can run some dye through the cath and recheck the cath placement to ensure the cath is still where it's suposed to be. If it's slipped just a few cm's the meds won't be delivered to the IT space and lose most of their effeciency. If it has slipped completely out of the IT and epidural space the meds are simply being delivered IM or sub Q and the relief from subQ or IM meds is nothing compared to the relief potential from IT meds. You may want to aks to have the cath placement checked if he's been thrashing about.

    Good luck Dave

    Last edited by Shoreline; 10-08-2005 at 09:30 AM.

     
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