Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 Maddy saw a pscychologist a few months ago,he said he didnt see the need to medicate Maddy and he could see she had physical pain. Maddy has a significant developmental delay as well and wasnt able to answer many questions appropriatly. There is no pediatric pain management team with in 3 hours of where we live. There is one near SF,CA and one in LA,CA. Her neurologist said he feels she doesnt have neuropathy and she was on the meds you listed previously for seizures and was weened off because the Topomax controlled her seizures better. Ty for the advice. ________________________________ To: tetheredspinalcord Sent: Wed, February 3, 2010 9:21:03 PM Subject: Re: a bit of good news , Have you checked to see if the facility has a physiatrist? A physiatrist should be able to handle pain control issues. Also, what about an independent practitioner (unrelated to that particular hospital)? Unless you are in a very rural area, there should be independent pain clinics or physiatrists. I took Topamax for close to 10 years. I have a angioma in my brain that has hemorrhaged at least 4 times. Since the first hemorrhage, I have had chronic headaches. Originally, I was put on the Topamax to control them. It had the added benefit that it works to control neuropathy. Apparently, the Topamax is not enough to control your daughter's neuropathy. There are a host of other anti-seizure meds that work for neuropathy, including: Keppra, Tegretol (carbamepazine), gabatril, and I think there are at least a few more that I can't think of off the top of my head (heading to bed). You may want to look into those if she hasn't tried them before when trying to treat her seizures and had bad side effects. The only really negative side effect I had from the Topamax is that it really screwed with the language center of my brain. There is a reason its nickname is " stupimax. " LOL I knew I had problems when I was taking it, but didn't realize how bad it was until I switched to Keppra and then switched back. I remember clearly lying on the mat in PT and I couldn't even form a single sentence. I was so frustrated, I was almost in tears. I can only imagine how people with apahasia from a stroke feel. Jenn On Wed, Feb 3, 2010 at 8:06 PM, Edgecomb wrote: > > > The hospital doesnt have a pain service. She would have to go to Stanford > whic is 3 hrs away.We are looking into that as well. Some friends of ours > son goes there and they are helpful. > They tried a few times to put her on neurotin and it made her vomit like > crazy,she is currently is on Topamax and it works well at controlling her > seizures. Her neurolgist believes she doesnt have migraines. > The results of the u/s arent back yet,doc refered her to urologist for the > urodynamic testing,she feels her bladder issues are tied to tc. > Ty for the advice. > > > > ________________________________ > From: JBobin <jlbobin@... <jlbobin%40gmail.com>> > To: tetheredspinalcord <tetheredspinalcord%40yahoogroups.com> > Sent: Wed, February 3, 2010 4:57:53 PM > Subject: Re: a bit of good news > > > , > > I think it is pretty rare for neurosurgery to do pain management. Typically > pain management is handled by either pain management clinic or a > physiatrist, or sometimes neurology. Most neurosurgeons only handle the > surgery. If surgery is not an option or if you choose surgery and the pain > persists after surgery, then the neurosurgeon typically hands the patient > off to one of the aforementioned docs. Their specialty is surgery, not pain > management. The only pain they will typically manage is the immediate > post-operative pain. If the neurosurgeon doesn't seem interested in long > term pain management, that is likely why. You may get better results by > seeing one of the 3 other types of docs that typically do handle chronic > pain management. > > I have both a neurologist and physiatrist. I started with a neurologist (I > still have him on standby, but don't seem him regularly anymore). I found a > great physiatrist who handles my pain management. I have been to several > pain management clinics and never had any success with them. But there are > others on the list who have. I find that physiatrists take a more > " wholistic " approach to pain management. Not only do they treat the pain > with meds, but they can also do injections (I think some pain management > docs do too). But they also look at how they can decrease your pain in > other > ways (ie: PT, etc) and they also look at how they can decrease the level of > disability (assistive devices, etc) and how to heal the injury or disease > or > at least try to stop any further progression. For someone with NTD, this > could be something like focusing on decreasing inflammation that could > cause > further problems). My experience with pain management clinics has always > been the same. They always want to focus on injections first (not > necessarily a bad thing, the injections, but they do it in lieu of treating > the immediate pain you went in with). Then you're stuck with the pain until > you are scheduled for the injection. And it can often take more than on > injection to see an improvement. I think pain management docs are so wary > of > people going in just for narcotic pain meds that this is their current > approach. > > You may want to ask if your daughter's anti-epilieptic meds can be changed > to one that does well controlling neuropathic pain. Many of them do very > well controlling neuropathy. Neurontin is one of the first-line meds for > neuropathy.Then, she is taking one med and it is doing double duty. If her > current seizure meds are controlling her seizures completely, then perhaps > they can find one that works well with her current med(s) that works for > neuropathy. I know docs are hesitant to change anti-seizure meds when they > are successfully controlling the seizures, but anti-seizure meds all have > lousy side effects. And if she were able to take fewer, rather than more, > its always better for the side effect profile. So, that is something you > can > ask about. > > It sounds like she has a good pediatrician on her side. It is always > helpful > when you have at least one doc on your side. They can be a good advocate > for > her and help to get the other specialists to take a more detailed look and > interest in her case. It is really difficult for the patient/parents to > tell > a specialist that the situation is urgent and the appointment needs to be > sooner (most people think their situation is more urgent than the doctor's > office), but when there is at least one doc that sees the situation as > urgent, they have better luck at getting appointments moved up. Either by > doing a " stat " referral or talking to the other physician's office > directly. > I think her pediatrician sounds like an excellent asset in her fight. > > Have you gotten the results of her kidney ultrasound? Hopefully everything > was normal. If the results were normal, then I'm betting that they will > leave the urodynamic study when its scheduled. But if they see any > abnormalities in the u/s, they they should move it much sooner. Its hard > for > them to know what is causing the damage and how to proceed without the > urodynamic study. > > Take care, > > Jenn > > On Wed, Feb 3, 2010 at 6:59 PM, Edgecomb <cedgecomb_1977@...<cedgecomb_1977%40yahoo.com> > >wrote: > > > > > > > I took Maddy to see her pediatrician. She actually listened to me. She > said > > she thinks she has a tethered cord,based on the symptoms. She also said > > neurosurgery should be the one who manages her headaches. She send an > urgent > > referal over to urology for a urodynamic study,the appointment is in > April > > now. She also had an ultrasound of the kidneys and bladder done. We also > saw > > the neurologist who agreed,didnt change her seizures med which was good > and > > said neurosurgery needs to be managing her pain. I will keep bother nsg > > until they help her. I also am praying they can get her in sooner for the > > urodynamic testing. Thank you all for the prayers and advice. I > appreciate > > and I dont feel like we are alone. Do any of you have a fb? I am on > their. I > > am also on yahoo im (same name) andskype carrie cherry. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2010 Report Share Posted February 4, 2010 The psychologist said he didnt think it was neccesary at this time to continue treatment or refer her to a psychiatrist. ________________________________ To: tetheredspinalcord Sent: Wed, February 3, 2010 9:46:04 PM Subject: Re: a bit of good news I was referring to a physiatrist (no psychiatrist/psychologist). Physiatrists are also listed under physical medicine and rehabilitation. Jenn On Thu, Feb 4, 2010 at 12:29 AM, Edgecomb wrote: > > > Maddy saw a pscychologist a few months ago,he said he didnt see the need to > medicate Maddy and he could see she had physical pain. Maddy has a > significant developmental delay as well and wasnt able to answer many > questions appropriatly. > There is no pediatric pain management team with in 3 hours of where we > live. There is one near SF,CA and one in LA,CA. > Her neurologist said he feels she doesnt have neuropathy and she was on the > meds you listed previously for seizures and was weened off because the > Topomax controlled her seizures better. Ty for the advice. > > ________________________________ > From: JBobin <jlbobin@... <jlbobin%40gmail.com>> > To: tetheredspinalcord <tetheredspinalcord%40yahoogroups.com> > Sent: Wed, February 3, 2010 9:21:03 PM > > Subject: Re: a bit of good news > > , > > Have you checked to see if the facility has a physiatrist? A physiatrist > should be able to handle pain control issues. Also, what about an > independent practitioner (unrelated to that particular hospital)? Unless > you are in a very rural area, there should be independent pain clinics or > physiatrists. > > I took Topamax for close to 10 years. I have a angioma in my brain that has > hemorrhaged at least 4 times. Since the first hemorrhage, I have had > chronic > headaches. Originally, I was put on the Topamax to control them. It had the > added benefit that it works to control neuropathy. Apparently, the Topamax > is not enough to control your daughter's neuropathy. There are a host of > other anti-seizure meds that work for neuropathy, including: Keppra, > Tegretol (carbamepazine), gabatril, and I think there are at least a few > more that I can't think of off the top of my head (heading to bed). You may > want to look into those if she hasn't tried them before when trying to > treat > her seizures and had bad side effects. The only really negative side effect > I had from the Topamax is that it really screwed with the language center > of > my brain. There is a reason its nickname is " stupimax. " LOL I knew I had > problems when I was taking it, but didn't realize how bad it was until I > switched to Keppra and then switched back. I remember clearly lying on the > mat in PT and I couldn't even form a single sentence. I was so frustrated, > I > was almost in tears. I can only imagine how people with apahasia from a > stroke feel. > > Jenn > > On Wed, Feb 3, 2010 at 8:06 PM, Edgecomb <cedgecomb_1977@...<cedgecomb_1977%40yahoo.com> > >wrote: > > > > > > > The hospital doesnt have a pain service. She would have to go to Stanford > > whic is 3 hrs away.We are looking into that as well. Some friends of ours > > son goes there and they are helpful. > > They tried a few times to put her on neurotin and it made her vomit like > > crazy,she is currently is on Topamax and it works well at controlling her > > seizures. Her neurolgist believes she doesnt have migraines. > > The results of the u/s arent back yet,doc refered her to urologist for > the > > urodynamic testing,she feels her bladder issues are tied to tc. > > Ty for the advice. > > > > > > > > ________________________________ > > From: JBobin <jlbobin@... <jlbobin%40gmail.com> <jlbobin% > 40gmail.com>> > > To: tetheredspinalcord <tetheredspinalcord%40yahoogroups.com> > <tetheredspinalcord%40yahoogroups.com> > > > Sent: Wed, February 3, 2010 4:57:53 PM > > Subject: Re: a bit of good news > > > > > > , > > > > I think it is pretty rare for neurosurgery to do pain management. > Typically > > pain management is handled by either pain management clinic or a > > physiatrist, or sometimes neurology. Most neurosurgeons only handle the > > surgery. If surgery is not an option or if you choose surgery and the > pain > > persists after surgery, then the neurosurgeon typically hands the patient > > off to one of the aforementioned docs. Their specialty is surgery, not > pain > > management. The only pain they will typically manage is the immediate > > post-operative pain. If the neurosurgeon doesn't seem interested in long > > term pain management, that is likely why. You may get better results by > > seeing one of the 3 other types of docs that typically do handle chronic > > pain management. > > > > I have both a neurologist and physiatrist. I started with a neurologist > (I > > still have him on standby, but don't seem him regularly anymore). I found > a > > great physiatrist who handles my pain management. I have been to several > > pain management clinics and never had any success with them. But there > are > > others on the list who have. I find that physiatrists take a more > > " wholistic " approach to pain management. Not only do they treat the pain > > with meds, but they can also do injections (I think some pain management > > docs do too). But they also look at how they can decrease your pain in > > other > > ways (ie: PT, etc) and they also look at how they can decrease the level > of > > disability (assistive devices, etc) and how to heal the injury or disease > > or > > at least try to stop any further progression. For someone with NTD, this > > could be something like focusing on decreasing inflammation that could > > cause > > further problems). My experience with pain management clinics has always > > been the same. They always want to focus on injections first (not > > necessarily a bad thing, the injections, but they do it in lieu of > treating > > the immediate pain you went in with). Then you're stuck with the pain > until > > you are scheduled for the injection. And it can often take more than on > > injection to see an improvement. I think pain management docs are so wary > > of > > people going in just for narcotic pain meds that this is their current > > approach. > > > > You may want to ask if your daughter's anti-epilieptic meds can be > changed > > to one that does well controlling neuropathic pain. Many of them do very > > well controlling neuropathy. Neurontin is one of the first-line meds for > > neuropathy.Then, she is taking one med and it is doing double duty. If > her > > current seizure meds are controlling her seizures completely, then > perhaps > > they can find one that works well with her current med(s) that works for > > neuropathy. I know docs are hesitant to change anti-seizure meds when > they > > are successfully controlling the seizures, but anti-seizure meds all have > > lousy side effects. And if she were able to take fewer, rather than more, > > its always better for the side effect profile. So, that is something you > > can > > ask about. > > > > It sounds like she has a good pediatrician on her side. It is always > > helpful > > when you have at least one doc on your side. They can be a good advocate > > for > > her and help to get the other specialists to take a more detailed look > and > > interest in her case. It is really difficult for the patient/parents to > > tell > > a specialist that the situation is urgent and the appointment needs to be > > sooner (most people think their situation is more urgent than the > doctor's > > office), but when there is at least one doc that sees the situation as > > urgent, they have better luck at getting appointments moved up. Either by > > doing a " stat " referral or talking to the other physician's office > > directly. > > I think her pediatrician sounds like an excellent asset in her fight. > > > > Have you gotten the results of her kidney ultrasound? Hopefully > everything > > was normal. If the results were normal, then I'm betting that they will > > leave the urodynamic study when its scheduled. But if they see any > > abnormalities in the u/s, they they should move it much sooner. Its hard > > for > > them to know what is causing the damage and how to proceed without the > > urodynamic study. > > > > Take care, > > > > Jenn > > > > On Wed, Feb 3, 2010 at 6:59 PM, Edgecomb < > cedgecomb_1977@... <cedgecomb_1977%40yahoo.com><cedgecomb_1977% > 40yahoo.com> > > > >wrote: > > > > > > > > > > > I took Maddy to see her pediatrician. She actually listened to me. She > > said > > > she thinks she has a tethered cord,based on the symptoms. She also said > > > neurosurgery should be the one who manages her headaches. She send an > > urgent > > > referal over to urology for a urodynamic study,the appointment is in > > April > > > now. She also had an ultrasound of the kidneys and bladder done. We > also > > saw > > > the neurologist who agreed,didnt change her seizures med which was good > > and > > > said neurosurgery needs to be managing her pain. I will keep bother nsg > > > until they help her. I also am praying they can get her in sooner for > the > > > urodynamic testing. Thank you all for the prayers and advice. I > > appreciate > > > and I dont feel like we are alone. Do any of you have a fb? I am on > > their. I > > > am also on yahoo im (same name) andskype carrie cherry. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 I am not talking about a psychiatrist, but a physiatrist. Physiatrists deal not with mental, but physical problems, especially pain. They are also listed under " physical medicine & rehabilitation " . Jenn Sent from my iPhone On Feb 4, 2010, at 0:49, Edgecomb wrote: > The psychologist said he didnt think it was neccesary at this time > to continue treatment or refer her to a psychiatrist. > > ________________________________ > > To: tetheredspinalcord > Sent: Wed, February 3, 2010 9:46:04 PM > Subject: Re: a bit of good news > > I was referring to a physiatrist (no psychiatrist/psychologist). > Physiatrists are also listed under physical medicine and > rehabilitation. > > Jenn > > On Thu, Feb 4, 2010 at 12:29 AM, Edgecomb > wrote: > > > > > > > Maddy saw a pscychologist a few months ago,he said he didnt see > the need to > > medicate Maddy and he could see she had physical pain. Maddy has a > > significant developmental delay as well and wasnt able to answer > many > > questions appropriatly. > > There is no pediatric pain management team with in 3 hours of > where we > > live. There is one near SF,CA and one in LA,CA. > > Her neurologist said he feels she doesnt have neuropathy and she > was on the > > meds you listed previously for seizures and was weened off because > the > > Topomax controlled her seizures better. Ty for the advice. > > > > ________________________________ > > From: JBobin <jlbobin@... <jlbobin%40gmail.com>> > > To: tetheredspinalcord <tetheredspinalcord > %40yahoogroups.com> > > Sent: Wed, February 3, 2010 9:21:03 PM > > > > Subject: Re: a bit of good news > > > > , > > > > Have you checked to see if the facility has a physiatrist? A > physiatrist > > should be able to handle pain control issues. Also, what about an > > independent practitioner (unrelated to that particular hospital)? > Unless > > you are in a very rural area, there should be independent pain > clinics or > > physiatrists. > > > > I took Topamax for close to 10 years. I have a angioma in my brain > that has > > hemorrhaged at least 4 times. Since the first hemorrhage, I have had > > chronic > > headaches. Originally, I was put on the Topamax to control them. > It had the > > added benefit that it works to control neuropathy. Apparently, the > Topamax > > is not enough to control your daughter's neuropathy. There are a > host of > > other anti-seizure meds that work for neuropathy, including: Keppra, > > Tegretol (carbamepazine), gabatril, and I think there are at least > a few > > more that I can't think of off the top of my head (heading to > bed). You may > > want to look into those if she hasn't tried them before when > trying to > > treat > > her seizures and had bad side effects. The only really negative > side effect > > I had from the Topamax is that it really screwed with the language > center > > of > > my brain. There is a reason its nickname is " stupimax. " LOL I knew > I had > > problems when I was taking it, but didn't realize how bad it was > until I > > switched to Keppra and then switched back. I remember clearly > lying on the > > mat in PT and I couldn't even form a single sentence. I was so > frustrated, > > I > > was almost in tears. I can only imagine how people with apahasia > from a > > stroke feel. > > > > Jenn > > > > On Wed, Feb 3, 2010 at 8:06 PM, Edgecomb <cedgecomb_1977@... > <cedgecomb_1977%40yahoo.com> > > >wrote: > > > > > > > > > > > The hospital doesnt have a pain service. She would have to go to > Stanford > > > whic is 3 hrs away.We are looking into that as well. Some > friends of ours > > > son goes there and they are helpful. > > > They tried a few times to put her on neurotin and it made her > vomit like > > > crazy,she is currently is on Topamax and it works well at > controlling her > > > seizures. Her neurolgist believes she doesnt have migraines. > > > The results of the u/s arent back yet,doc refered her to > urologist for > > the > > > urodynamic testing,she feels her bladder issues are tied to tc. > > > Ty for the advice. > > > > > > > > > > > > ________________________________ > > > From: JBobin <jlbobin@... <jlbobin%40gmail.com> <jlbobin% > > 40gmail.com>> > > > To: tetheredspinalcord <tetheredspinalcord > %40yahoogroups.com> > > <tetheredspinalcord%40yahoogroups.com> > > > > > Sent: Wed, February 3, 2010 4:57:53 PM > > > Subject: Re: a bit of good news > > > > > > > > > , > > > > > > I think it is pretty rare for neurosurgery to do pain management. > > Typically > > > pain management is handled by either pain management clinic or a > > > physiatrist, or sometimes neurology. Most neurosurgeons only > handle the > > > surgery. If surgery is not an option or if you choose surgery > and the > > pain > > > persists after surgery, then the neurosurgeon typically hands > the patient > > > off to one of the aforementioned docs. Their specialty is > surgery, not > > pain > > > management. The only pain they will typically manage is the > immediate > > > post-operative pain. If the neurosurgeon doesn't seem interested > in long > > > term pain management, that is likely why. You may get better > results by > > > seeing one of the 3 other types of docs that typically do handle > chronic > > > pain management. > > > > > > I have both a neurologist and physiatrist. I started with a > neurologist > > (I > > > still have him on standby, but don't seem him regularly > anymore). I found > > a > > > great physiatrist who handles my pain management. I have been to > several > > > pain management clinics and never had any success with them. But > there > > are > > > others on the list who have. I find that physiatrists take a more > > > " wholistic " approach to pain management. Not only do they treat > the pain > > > with meds, but they can also do injections (I think some pain > management > > > docs do too). But they also look at how they can decrease your > pain in > > > other > > > ways (ie: PT, etc) and they also look at how they can decrease > the level > > of > > > disability (assistive devices, etc) and how to heal the injury > or disease > > > or > > > at least try to stop any further progression. For someone with > NTD, this > > > could be something like focusing on decreasing inflammation that > could > > > cause > > > further problems). My experience with pain management clinics > has always > > > been the same. They always want to focus on injections first (not > > > necessarily a bad thing, the injections, but they do it in lieu of > > treating > > > the immediate pain you went in with). Then you're stuck with the > pain > > until > > > you are scheduled for the injection. And it can often take more > than on > > > injection to see an improvement. I think pain management docs > are so wary > > > of > > > people going in just for narcotic pain meds that this is their > current > > > approach. > > > > > > You may want to ask if your daughter's anti-epilieptic meds can be > > changed > > > to one that does well controlling neuropathic pain. Many of them > do very > > > well controlling neuropathy. Neurontin is one of the first-line > meds for > > > neuropathy.Then, she is taking one med and it is doing double > duty. If > > her > > > current seizure meds are controlling her seizures completely, then > > perhaps > > > they can find one that works well with her current med(s) that > works for > > > neuropathy. I know docs are hesitant to change anti-seizure meds > when > > they > > > are successfully controlling the seizures, but anti-seizure meds > all have > > > lousy side effects. And if she were able to take fewer, rather > than more, > > > its always better for the side effect profile. So, that is > something you > > > can > > > ask about. > > > > > > It sounds like she has a good pediatrician on her side. It is > always > > > helpful > > > when you have at least one doc on your side. They can be a good > advocate > > > for > > > her and help to get the other specialists to take a more > detailed look > > and > > > interest in her case. It is really difficult for the patient/ > parents to > > > tell > > > a specialist that the situation is urgent and the appointment > needs to be > > > sooner (most people think their situation is more urgent than the > > doctor's > > > office), but when there is at least one doc that sees the > situation as > > > urgent, they have better luck at getting appointments moved up. > Either by > > > doing a " stat " referral or talking to the other physician's office > > > directly. > > > I think her pediatrician sounds like an excellent asset in her > fight. > > > > > > Have you gotten the results of her kidney ultrasound? Hopefully > > everything > > > was normal. If the results were normal, then I'm betting that > they will > > > leave the urodynamic study when its scheduled. But if they see any > > > abnormalities in the u/s, they they should move it much sooner. > Its hard > > > for > > > them to know what is causing the damage and how to proceed > without the > > > urodynamic study. > > > > > > Take care, > > > > > > Jenn > > > > > > On Wed, Feb 3, 2010 at 6:59 PM, Edgecomb < > > cedgecomb_1977@... > <cedgecomb_1977%40yahoo.com><cedgecomb_1977% > > 40yahoo.com> > > > > > >wrote: > > > > > > > > > > > > > > > I took Maddy to see her pediatrician. She actually listened to > me. She > > > said > > > > she thinks she has a tethered cord,based on the symptoms. She > also said > > > > neurosurgery should be the one who manages her headaches. She > send an > > > urgent > > > > referal over to urology for a urodynamic study,the appointment > is in > > > April > > > > now. She also had an ultrasound of the kidneys and bladder > done. We > > also > > > saw > > > > the neurologist who agreed,didnt change her seizures med which > was good > > > and > > > > said neurosurgery needs to be managing her pain. I will keep > bother nsg > > > > until they help her. I also am praying they can get her in > sooner for > > the > > > > urodynamic testing. Thank you all for the prayers and advice. I > > > appreciate > > > > and I dont feel like we are alone. Do any of you have a fb? I > am on > > > their. I > > > > am also on yahoo im (same name) andskype carrie cherry. > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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