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Thread: BACLOFEN Pump A blessing and a Curse

  1. #1

    BACLOFEN Pump A blessing and a Curse

    Hello Everyone. I am new here but have been reading posts to look for help for my daughter. My daughter has cerebral palsy and is spastic quad. She is 20 and had the BACLOFEN Pump implanted when she was 4 years old in 2001. She has always been in regular classes and before this last episode had just started college, spoke 2 languages so she had a goal to become an ESL teacher. She did lots of community service events, had friends and just had a life like most 20 year olds socially. She originally did not speak so that anyone but family would understand her and she drooled very excessively but after the BACLOFEN pump it all changed for the better and kept getting better. No more wet shirts from excessive drooling, choking on liquids, swallow studies or even chest tightness. Her speech improved and she talks like everyone else so much that friends think it's me when she answers my phone. The doctors all said they didn't understand how that happened and never heard of the pump having an effect on speech. For her spasticity it seemed to work as well as expected because she was able to walk in a fully supported walker periodically and take classes in her wheelchair for ballet and things kids do. The pump allowed her to do things she couldn't do before and life was great for more than ten years.

    The history of these pump issues started in 2011. One day she arrived home from school talking strangely and acting even stranger because she didn't want to eat and kept saying that she was tasting paint so she thought there was paint on her food. She had been driving her power chair since age 5 but at this time she would drive and then stop and stare or start trying to drive away as if she were running away. She started becoming very fearful and saying something was wrong with her. I called the doctor who was filling her pump because besides asthma meds she didn't have any other meds or anything else going on but the pump. He said maybe it was something with the pump so he said give her oral BACLOFEN and bring her in on Monday. This was Thursday. She started not sleeping and her nervousness and hesitation seemed to get worse over the next two days. To make a long story short, I subsequently took her to the ER and they said she had an anxiety disorder. I disagreed and they literally kicked us out after 3 days because I wouldn't let them take her to Psych. I ended up taking her to 3 different hospitals, who didn't want to do anything to find out about the pump because they said they don't want to work on pumps that they didn't implant. Since we had relocated from another state going back to those doctors was not an option. I ended up taking her to a private psychiatrist as the first hospital said after they kicked us out with that recommendation and a prescription for Ativan. The psychiatrist after taking the history looked at her and said she was having some sort of allergic reaction because by then her tongue seemed to be protruding. I took her to the ER and they said they didn't work on pumps either and that they didn't have to take her because it wasn't life threatening as she had an airway and could breathe. At this point she couldn't even swallow water without choking on it. I refused to leave and signed her in as their patient so they took her. We still sat there for 3 days while they did nothing to resolve the issue and ended up begging the original hospital to take her back because by then she progressed to needing a feeding tube. I agreed to the Psych consult and anything else they wanted because the 2nd hospital wouldn't do anything after the surgeon said he didn't want to work on a pump he didn't put in and only offered to take it out. I didn't want it out, just wanted it fixed. Transferred back to 1st hospital and subjected to every test known to man because they didn't believe it was the pump. I kept asking them to do a dye study because when I called the doctor who implanted it they said that would show the problem if it's the pump. They instead did every other test.. spinal tap, EEG, blood cultures, MRI, labs and took another 30 days since all of those were normal before they finally performed the dye study. Since they couldn't get the needle in they claimed they would have to open her up so see but then the surgeon came out and said they found the pump was disconnected and here all that BACLOFEN had been spilling inside her body for almost a month. To add injury to insult by then they had been giving her all sorts of meds to deal with the withdrawal symptoms.. mainly Valium, Ativan, Benadryl and other muscle relaxers. At one point her her rate was 252 and she was was screaming in pain in spasms. I tried to take her out but they threatened to call CPS and the police on me for refusing care. I never left her side. I started researching online and calling relatives to help look for a cure. After finding the disconnection they took her to the OR and did surgery. She had the larger volume pump but they replaced it with a smaller model. Then after a couple of days she seemed to be getting better but then the Peds Team decided she didn't need any of the other meds but the pump so they cut everything off the next day. It's like she went insane and started seeing hallucinations and trying to bite herself and pull her hair out. They tied her to the bed then put her back on all the m said they took off. She developed a T-long something with her heart. Then the Pain Management Team had to come back in and wean her off all the other meds while they adjusted the BACLOFEN pump dosage. After that she was weak and mentally had lost her short term memory. They sent her to a kids rehab hospital. So a total of 4 months later she got out of rehab to return to school. She was starting the 8th grade. Fast forward to 4 more pump failures, two related to the pump recall and a total of 8 surgeries related to either the pump or catheter issue.

    Now we come to 7 years later since the first disconnection and still since that time she has never been in the hospital unless it was related to this BACLOFEN pump. Now since the last surgery I felt that the pump still never worked correctly and the surgeon refused to operate on her again because he said her access was limited in the spinal region because of the scarring and they claimed that her getting a spinal fusion was the cause for all of the pump issues with the disconnection and catheter because it makes it easier to pull the Catheter out by the rods interfering. It seems like every time we thought things were normal then another complication would come up. She never had a chance to return to normal because there was no stability in the doctors who filled the pump or their knowledge. The pediatric neurologist who used to fill it kept injecting her outside the pump and she would go into withdrawal within 2 weeks of the Refill. I finally got fed up of arguing with her and we left that practice because even the doctors at the hospital told her she needed to use fluoroscopy to see the port clearly but she said she didn't have time to leave her office to go there. Then the next doctor gave her the generic Gablofen without asking even though she could not take anything but the name brand Lioresal that Medtronic uses. He claimed its all the same. I never knew that for 9 months because they would always come in the room with the medicine already prepared in the tray for injection. The regular nurse went on vacation and that's when the other nurse came in with the package and I discovered it was not what she should have. Since then I demanded that they order the Lioresal but my daughter since the first injection broke out in hives 3 days later since it takes her about 3 days to get the BACLOFEN up in her catheter where the effect or change is noticed. I said I wanted the pump out because she wasn't getting better mentally. From the first injection of the Gablofen she has changed and so the doctor had begun taking her dose down so we could have the pump removed. She had a dose of 499 mcg at that time and he took it down over months to 112 before I found out she wasn't getting Lioresal. The concentration had also been cut from 2,000 to 1,000 to 500 during this time. Then I told him to use Lioresal and we started taking the dose back up to 250 mcg with a concentration of 500 because that's where they always put it after surgery. We went to another doctor because they said it was a special order so they couldn't keep getting the Lioresal because the hospital had changed a long time ago to Gablofen since it was cheaper and many in this area have also. Even with refilling with Lioresal she still has never stopped having auditory hallucinations since the Gablofen. At first they used the term delirium but after so many consults with other doctors I hear the terms underdosage and auditory hallucinations but she continues to have the voices in her head. Physically she is wonderful but mentally she is not herself so school and most socializing on her own is out. We have even been refused care at therapy because they claim the voices were too distracting. I need help to get my beautiful daughter back to herself. She told me that the pump was like a black cloud over her head because she never knew when it would fail or have some kind of issues and these doctors that she has had seem like they don't know how to manage the pump because the doses have been taken up and down as much as 40% every couple of days when now I find out that it's not supposed to be managed that way. She gets the pump filled about every 4 weeks and around 3 days before and up to a week after the symptoms of not sleeping and increased mental status changes are worse. BACLOFEN also effects her monthly cycle (works on prolactin) as well as her ability to urinate (holding onto the urine) and causes more constipation. All if this comes after doing much research and over 18 consults with different specialties looking for help. I don't know anyone who had had the pump for over 14 years like her and I have tried to get help because the doctor said that once you have the pump it's for life and you can't get it out after a certain amount of time. I know personally of 2 of her friends who got it out after only about a year and died so I am afraid of that. All day she just talks to herself and laughs a lot. Some days she is better but it doesn't last long. I have neurologist and physchiatrist and they have tried many meds like for schizophrenia and they made things worse then had to be weaned off those. They both say it's related to the BACLOFEN pump. Please if someone can give some information or insight or the name of the most experienced hospital or doctor for the pump management then I would be grateful. I feel like I have been fighting with all these doctors for the last 7 years for the right for my daughter to have as close to normal as she can have yet I feel they don't expect much from someone in a wheelchair. I will never accept that. I will take her wherever I need to for help so distance is not an obstacle. Thank you.

  2. #2
    So sorry you have had these bad experiences. I am not a good resource for information on baclofen pumps, nor CP, but hope that some of our members who have personal experience with pumps will chime in here.

    By the way, your duplicate post in the Brain Injury forum was removed. We don't allow duplication posts in different forums. Hope you understand.

    (KLD)

  3. #3
    I'm really sorry to hear about this, I wish I could help but I have only had my pump for five months
    C5/C6 Complete since 08/22/09

  4. #4
    Theoretically, Gablofen and Lioresal are supposed to be the same. There are also compounded formulations(cheaper) but VA prohibits any type of compounded solution due to the erratic behavior and also granulomas forming at the tip of the catheter. I only have experience with Lioresal by Medtronic.
    The insertion site is not hard for someone who does it all the time. Are you saying that the doctor missed the injection port? This is a pocket fill and someone can die from that. To do a dye study they have to fill in the other port and they must know how to do that.
    There is a template in the kit and also you should be able to feel the divet in the middle. I have numb fingers and I can still feel it but also use the template. If another device is needed Fluoro, is no longer needed as the new ultrasound machines are easier and better.
    Why don't you go to a doctor that is not a surgeon and manages the pump? Neurologist, rehab doctor, pain anesthesia? Call Medtronic and they will tell you what providers are in your area. The less frequent refills- the better. So anyone over 200 mcg/day (of the 500mcg/day) at the next refill we do a bridge bolus up to 2000mcg/day concentration. and then increase from there as needed. Because the medicine has not preservative, it should not stay in the pump more than 6 months.

    She had classic signs of withdrawal but the first signs I have seen besides increased spasticity is itching and slight altered mental status. So it seems this had been going on for quite a while. And titrating down the Baclofen by mouth while going up on pump dose sounds the safest. I would keep an emergency supply of Baclofen po available. 5-10 mg three times a day should keep her from a life threatening emergency until it can be taken care of.
    The pump has an alarm but it only alarms when getting low- because it is programmed in. It does not know really how much med is in, or out, or if the catheter is pinched, cut off , and the logs need to be read. It is not high tech in that it has a high or low pressure alarm.
    MRI will stall the pump so it has to be checked after that is done and make sure it restarts. And when the pump stalls- it does not alarm but you can see on the log that is stalled and when it restarted.
    CWO

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