lillehei Posted September 23, 2012 Share Posted September 23, 2012 I thought this might get more coverage in the K-8 instead of just special needs. My 11 year old daughter has chronic back pain. She has had for months now but in the last three weeks it has gotten so much worse that she can't concentrate on her schoolwork. We have taken the last three weeks to try to get the pain under control with a variety of specialists, PT and meds but its just not getting better. We really have to get back to school. I have pared down her agenda to the basics: math, science, history, and language arts. I have cut out Spanish, geography, Bible, s*x ed, typing and music. What y'all think? Anyone else in a similar situation? Any advice? Quote Link to comment Share on other sites More sharing options...
woolybear Posted September 23, 2012 Share Posted September 23, 2012 I don't have any advice, but :grouphug: for you and your daughter. Just one thought though, couldn't you take more time off? I think if she is having that much pain, it must be very hard to focus on academics. I would think even a few months or more would be fine. How can she really learn like that? I don't know. I haven't btdt, so it's just what I was thinking. I also happen to be a pretty relaxed hser. I hope the pain gets taken care of. In the meantime, be gentle (to yourself as well dd.) Quote Link to comment Share on other sites More sharing options...
lillehei Posted September 23, 2012 Author Share Posted September 23, 2012 I don't have any advice, but :grouphug: for you and your daughter. Just one thought though, couldn't you take more time off? I think if she is having that much pain, it must be very hard to focus on academics. I would think even a few months or more would be fine. How can she really learn like that? I don't know. I haven't btdt, so it's just what I was thinking. I also happen to be a pretty relaxed hser. I hope the pain gets taken care of. In the meantime, be gentle (to yourself as well dd.) We have thought of postponing school longer but we took time off this summer and are worried of her not finishing her grade. My dh is even more worried than I am. If it were just me, I would give her more time off but dh says I have learned to completely live my live in pain (with the occasional small break) and chronic illnesses so she can, too. I thought letting work while resting on the heating pad or working orally while her lying down to ease the pain. We also cut any sport or extra-curricular activity that could make her feel worse, but that makes her sad. I feel so awful about this whole thing. I have recently been put in a wheelchair to get around and I feel like my illnesses have made her so tense that I am causing her back pain. Quote Link to comment Share on other sites More sharing options...
Bee Happy Posted September 23, 2012 Share Posted September 23, 2012 Is it due to an injury? I'm sorry if I sound ignorant about it. I did something to twist my back (something minor) a few years back and it took a little over a month before I could even sit comfortably. Back pain can be so extreme. Maybe just a little more healing time? Quote Link to comment Share on other sites More sharing options...
caroljenn Posted September 23, 2012 Share Posted September 23, 2012 My daughter has Chronic Fatigue, which comes with the requisite fatigue, body aches, low grade fever, nausea and some brain fog. We are learning to school when she feels well. I plan very few holidays, weekends, etc. because if she didn't school at least a little every day we would never get done with all of her schooling. Some days she doesn't do anything, so days she does 2-3 hours, and on good days, she does 7-8 hours. I think you have to roll with the punches. Your daughter's health is the most important thing, especially if she's only 11. Take care of her, do as much as you can, and all days are free game for school. Just because its a weekend doesn't mean it's school-free. Good luck and hope she feels much better soon! Quote Link to comment Share on other sites More sharing options...
lillehei Posted September 23, 2012 Author Share Posted September 23, 2012 Is it due to an injury? I'm sorry if I sound ignorant about it. I did something to twist my back (something minor) a few years back and it took a little over a month before I could even sit comfortably. Back pain can be so extreme. Maybe just a little more healing time? No injury. Started months ago with just a small pain at the spine on the bra line then has spread since then all over her back, shoulders and neck. We have seen an orthopedist specializing in the spine, a rheumatologist, pt, etc, etc. There is no pain management specialist anywhere near where we live. Quote Link to comment Share on other sites More sharing options...
mama27 Posted September 23, 2012 Share Posted September 23, 2012 My now 17 yo dd was diagnosed with chronic pain aka Fibromyalgia when she was 13. She just does what she can, when she can. Sometimes it worse than others. As she's gotten older she does more because she's gotten used to the pain. But, we did find out recently she can't work AND do school work. I'm not sure how she's going to cope as an adult. Quote Link to comment Share on other sites More sharing options...
serendipitous journey Posted September 23, 2012 Share Posted September 23, 2012 May I ask what she does when she is awake and not doing her school? and are there things she enjoys? I am not educating a child with chronic pain; but I have had chronic pain myself and have done a little work in quality-of-life for chronically ill children.... Quote Link to comment Share on other sites More sharing options...
angelmama1209 Posted September 24, 2012 Share Posted September 24, 2012 my cousin has had chronic back, neck, hip, and shoulder pain due to an undiagnosed broken neck 20 years ago. She swears by spinal touch therapy. Just another little known, non invasive, but supposedly highly effective treatment option. Maybe look it up and see if there's one in your area? Quote Link to comment Share on other sites More sharing options...
abba12 Posted September 24, 2012 Share Posted September 24, 2012 It's hard not having a proper diagnosis because the way you handle this will depend on whether it is a short term issue which can be fixed or a long term disability. If it's long term I'd consider what your goals are for this child. I know a homeschooler who had chronic health issues, she graduated at 21 with straight As instead of graduating at 17 and barely passing. I personally think your husbands attitude is a little harsh, I am legally blind, have been since birth, and I've learned to live around it. But if my child suddenly lost their sight, school would be the least of our worries for those first few months. If this is a long term problem then yes, she will have to learn to live with it, but that's a gradual process, not an overnight revelation. She is probably going through a lot emotionally right now, if she is in a lot of pain she may be feeling hopeless about herself and her future, if she is then I bet she has no motivation to do schoolwork or anything else for that matter. I'd be more concerned with getting her emotions and goals in line than her academics. Her confidence and her passion for life and the future needs to be there first. But, if you need to be doing some schoolwork, I would be keeping to the basics in math and LA. Move along at the necessary rate. More important is getting some enjoyment and purpose and 'fun' into her daily life. Does she love biology, or eastern history, or some other topic area? This, more than ever, is a situation for interest-led learning. Don't drop all the fun subjects to force the boring ones, bring the fun ones in as much as she is physically capable. Find her favorite topic area and run with it. Remember, if this is a long term issue she will learn to live with it, so yes, there's going to be gaps, but you can fill them in when she is coping better. Does it matter if she does chemistry this year or in two years time? You can always fill in the blanks later. Just work on whatever topics make her smile. In a practical sense, reading aloud can be helpful, your daughter is probably much more comfortable lying on the couch listening to you than sitting at a desk reading herself. She probably also has good and bad times, and in time you'll begin to learn when those are. She might find the pain gets worse as the day goes on, so work in the mornings. Or maybe the pain is worse when it's cold, so work during the warmest parts of the day, or when she can snuggle into a warm bed at night even. Good luck Quote Link to comment Share on other sites More sharing options...
Tiramisu Posted September 24, 2012 Share Posted September 24, 2012 It's hard not having a proper diagnosis because the way you handle this will depend on whether it is a short term issue which can be fixed or a long term disability. If it's long term I'd consider what your goals are for this child. I know a homeschooler who had chronic health issues, she graduated at 21 with straight As instead of graduating at 17 and barely passing. I personally think your husbands attitude is a little harsh, I am legally blind, have been since birth, and I've learned to live around it. But if my child suddenly lost their sight, school would be the least of our worries for those first few months. If this is a long term problem then yes, she will have to learn to live with it, but that's a gradual process, not an overnight revelation. She is probably going through a lot emotionally right now, if she is in a lot of pain she may be feeling hopeless about herself and her future, if she is then I bet she has no motivation to do schoolwork or anything else for that matter. I'd be more concerned with getting her emotions and goals in line than her academics. Her confidence and her passion for life and the future needs to be there first. But, if you need to be doing some schoolwork, I would be keeping to the basics in math and LA. Move along at the necessary rate. More important is getting some enjoyment and purpose and 'fun' into her daily life. Does she love biology, or eastern history, or some other topic area? This, more than ever, is a situation for interest-led learning. Don't drop all the fun subjects to force the boring ones, bring the fun ones in as much as she is physically capable. Find her favorite topic area and run with it. Remember, if this is a long term issue she will learn to live with it, so yes, there's going to be gaps, but you can fill them in when she is coping better. Does it matter if she does chemistry this year or in two years time? You can always fill in the blanks later. Just work on whatever topics make her smile. In a practical sense, reading aloud can be helpful, your daughter is probably much more comfortable lying on the couch listening to you than sitting at a desk reading herself. She probably also has good and bad times, and in time you'll begin to learn when those are. She might find the pain gets worse as the day goes on, so work in the mornings. Or maybe the pain is worse when it's cold, so work during the warmest parts of the day, or when she can snuggle into a warm bed at night even. Good luck :iagree::iagree:This is all excellent advice. Quote Link to comment Share on other sites More sharing options...
Guest submarines Posted September 24, 2012 Share Posted September 24, 2012 It's hard not having a proper diagnosis because the way you handle this will depend on whether it is a short term issue which can be fixed or a long term disability. If it's long term I'd consider what your goals are for this child. I know a homeschooler who had chronic health issues, she graduated at 21 with straight As instead of graduating at 17 and barely passing. I personally think your husbands attitude is a little harsh, I am legally blind, have been since birth, and I've learned to live around it. But if my child suddenly lost their sight, school would be the least of our worries for those first few months. If this is a long term problem then yes, she will have to learn to live with it, but that's a gradual process, not an overnight revelation. She is probably going through a lot emotionally right now, if she is in a lot of pain she may be feeling hopeless about herself and her future, if she is then I bet she has no motivation to do schoolwork or anything else for that matter. I'd be more concerned with getting her emotions and goals in line than her academics. Her confidence and her passion for life and the future needs to be there first. But, if you need to be doing some schoolwork, I would be keeping to the basics in math and LA. Move along at the necessary rate. More important is getting some enjoyment and purpose and 'fun' into her daily life. Does she love biology, or eastern history, or some other topic area? This, more than ever, is a situation for interest-led learning. Don't drop all the fun subjects to force the boring ones, bring the fun ones in as much as she is physically capable. Find her favorite topic area and run with it. Remember, if this is a long term issue she will learn to live with it, so yes, there's going to be gaps, but you can fill them in when she is coping better. Does it matter if she does chemistry this year or in two years time? You can always fill in the blanks later. Just work on whatever topics make her smile. In a practical sense, reading aloud can be helpful, your daughter is probably much more comfortable lying on the couch listening to you than sitting at a desk reading herself. She probably also has good and bad times, and in time you'll begin to learn when those are. She might find the pain gets worse as the day goes on, so work in the mornings. Or maybe the pain is worse when it's cold, so work during the warmest parts of the day, or when she can snuggle into a warm bed at night even. Good luck :iagree::iagree::iagree: with everything. Quote Link to comment Share on other sites More sharing options...
babybryte Posted September 24, 2012 Share Posted September 24, 2012 Has your DD had an MRI done? I'm sure she has, but just thought I would check. I am so sorry she (and you!) are going through this. I have chronic back pain due to a ruptured disk surgery that didn't go well. My 11-year old DD has IBS. Some mornings she has a lot of stomach pain, and I just have to let her lay on the couch until she feels better. I am just so happy that we are able to homeschool. If she had to go to public school, she would be absent a lot and would probably have to take a lot of medicine to control her IBS. (This doesn't have anything to do with your situation....just wanted to share.) :) Quote Link to comment Share on other sites More sharing options...
helena Posted September 25, 2012 Share Posted September 25, 2012 (edited) My youngest dealt with chronic pain in her neck and back for about two years. She took a nasty fall on her neck, but really it's her tics from Tourettes that causes ongoing pain (she saw her ped. several times for it and had x-rays). It was so bad it was heartbreaking. She finally found great relief when she started a series of treatments similar to Rolfing. My husband has similar treatment so really he's the one who knows all about it. I thought it was going to be a small temporary relief, similar to a basic massage. It completely changed my daughters life. I can't let myself think about it right now or I'll cry. :001_smile: It blew my mind. After the first treatment there was major progress. I'm sure it doesn't work that way for everyone, but it did for her! She still has pain and soreness issues but nothing like before. The nature of tics are to rotate and come and go... so we may be dealing with this sort of stuff for... who knows how long. I believe as a side to TS she has OCD. She became overly focused on pain and discomfort I think (beyond what she was feeling in her body). I have Lupus, so she sees me in pain and uncomfortable more that I wish she did. There's a lot of guilt there on my part. But what can I do?? About a year and a half ago her Dr had her on watch for possible scoliosis. That was another factor complicating the whole thing. We saw him a few months ago and he was happy to report her back was "absolutely perfect" best words I ever heard! It was as if a massive burden was lifted off her. The good news that there was nothing wrong in that way gave her great relief. Psychologically she was liberated. She could change her thinking about herself. KWIM? Her back isn't damaged. We do the treatments when our friend is in town, we do epsom salt baths, Chinese ligament oils (can't wait for her to be open to acupuncture). When she's hurting I let her listen to books on tape while she lays in the bath, work in different positions on the floor, chairs, what ever it takes to get more comfortable. Lots of massage. Swimming. She had to get math and writing done. I had to prioritize what needed to get done so that beyond the basics, the books and projects most important to us got done. There's simply no room for 2nd rate work. Everything had to be my first pick of what I really really wanted her to do. I let her do a little work, rest, work, etc. I usually managed to get the important stuff done (when it was hurting badly). Lots of tenderness from family. It's scary to be in pain day after day. It messes with their sweet little minds. We like this heating pad because it's not electric so kiddo can fall asleep with it safely. http://www.amazon.com/HEAT-WAVE-Instant-Reusable-Heat/dp/B002Q700C8/ref=pd_sim_hpc_4 Big hugs to both of you. :grouphug: I wholeheartedly hope, that like us, this pain and worry will soon be a past chapter in your lives. :grouphug: I say whittle your school work down to the basics, and only the most beautiful and meaningful books and projects. :grouphug: Feel fee to PM me. Edited September 25, 2012 by helena Quote Link to comment Share on other sites More sharing options...
Pen Posted September 25, 2012 Share Posted September 25, 2012 I've not btdt with a child, but have had similar problems myself. To the extent you can use audio materials to allow lying down (or whatever is comfortable--I once had a situation where only standing was okay), perhaps educational movies and so on, I'd suggest doing that. "Writing" can be dictated to a tape recorder or a person (think Milton). A lot of math can be oral too. Audio might also be able to be used to work on a language. A lot of pain (and stress) makes it hard to think, so things that allow learning to take place and also mind to get off the pain at same time (such as great literature on audio) might help a lot. Reading things about others who have dealt with pain, such as Reynolds Price maybe could also help. Also maybe studying things about the brain, and nerves and back would make some sense. Meditation possibly. Things by ... cannot recall name right now... a Harvard MD who wrote The Relaxation Response. And of course a diagnosis might help a lot to know what needs to be or can be done for the back itself. Quote Link to comment Share on other sites More sharing options...
CatholicMom Posted September 25, 2012 Share Posted September 25, 2012 It's hard not having a proper diagnosis because the way you handle this will depend on whether it is a short term issue which can be fixed or a long term disability. If it's long term I'd consider what your goals are for this child. I know a homeschooler who had chronic health issues, she graduated at 21 with straight As instead of graduating at 17 and barely passing. I personally think your husbands attitude is a little harsh, I am legally blind, have been since birth, and I've learned to live around it. But if my child suddenly lost their sight, school would be the least of our worries for those first few months. If this is a long term problem then yes, she will have to learn to live with it, but that's a gradual process, not an overnight revelation. She is probably going through a lot emotionally right now, if she is in a lot of pain she may be feeling hopeless about herself and her future, if she is then I bet she has no motivation to do schoolwork or anything else for that matter. I'd be more concerned with getting her emotions and goals in line than her academics. Her confidence and her passion for life and the future needs to be there first. But, if you need to be doing some schoolwork, I would be keeping to the basics in math and LA. Move along at the necessary rate. More important is getting some enjoyment and purpose and 'fun' into her daily life. Does she love biology, or eastern history, or some other topic area? This, more than ever, is a situation for interest-led learning. Don't drop all the fun subjects to force the boring ones, bring the fun ones in as much as she is physically capable. Find her favorite topic area and run with it. Remember, if this is a long term issue she will learn to live with it, so yes, there's going to be gaps, but you can fill them in when she is coping better. Does it matter if she does chemistry this year or in two years time? You can always fill in the blanks later. Just work on whatever topics make her smile. In a practical sense, reading aloud can be helpful, your daughter is probably much more comfortable lying on the couch listening to you than sitting at a desk reading herself. She probably also has good and bad times, and in time you'll begin to learn when those are. She might find the pain gets worse as the day goes on, so work in the mornings. Or maybe the pain is worse when it's cold, so work during the warmest parts of the day, or when she can snuggle into a warm bed at night even. Good luck :iagree: I would be most worried about her mental state, until she's able to get some relief. I'd focus on the absolute essential basics (and not even that if it's too much) in terms of the 3 R's with a lapdesk on the couch or in bed or wherever she's comfortable, and don't push it. She's also at at tender age where this constant pain might break her mentally very easily and head her into depression. I'd do as much reading-aloud as possible so she can relax while you read. Also, audio books & resources might be a great help. SOTW audio & Jim Weiss CD's are good for history. Netflix movies, Mr.Wizard DVD's for science. Keep the content subjects as enjoyable and easy to accomplish as possible. I'd get her some literature she really loves to read on her own... or anything she loves to do while in a comfortable position, and make sure she has plenty to choose from, so she can have something to focus her mind on besides what she can't do and how much it hurts. It gets depressing to have a bad cold for 2 weeks straight, let alone be in constant pain for the indefinite future. I hope she can get some medical help and get pain relief! :grouphug: Quote Link to comment Share on other sites More sharing options...
lillehei Posted September 27, 2012 Author Share Posted September 27, 2012 I'm sorry everyone for not replying right away. This has been a terrible week for us: lots of crying, depression, tension, and more pain. We have really been pushed to a limit emotionally and physically. We have done lots of prayer and reading posts by people like yourselves and talking to family and friends and more doctors opinions. We decided, after 4 hours of crying and pleading by my daughter, to finally try the medicine the rheumatologist prescribed. So far the side effects have been bad, but she wants to keep on trying. I just keep praying that I am making the right choices medically. I also did talk to dh and just said we are not doing school until we get this under control. Praise the Lord I am homeschooling. I am so blessed that I chose to pull them from public school a couple years ago. If she were in ps right now, she would be stressed with packets of school to finish. Right now I am putting no stress on her and letting her do what feels comfortable. If that means laying down, sitting in her hammock chair, standing for little bits or taking a small walk, we try everything. Ugh. It is SO heartbreaking to see her suffer more each day. I really hope this med works! Quote Link to comment Share on other sites More sharing options...
CatholicMom Posted September 27, 2012 Share Posted September 27, 2012 I'm sorry everyone for not replying right away. This has been a terrible week for us: lots of crying, depression, tension, and more pain. We have really been pushed to a limit emotionally and physically. We have done lots of prayer and reading posts by people like yourselves and talking to family and friends and more doctors opinions. We decided, after 4 hours of crying and pleading by my daughter, to finally try the medicine the rheumatologist prescribed. So far the side effects have been bad, but she wants to keep on trying. I just keep praying that I am making the right choices medically. I also did talk to dh and just said we are not doing school until we get this under control. Praise the Lord I am homeschooling. I am so blessed that I chose to pull them from public school a couple years ago. If she were in ps right now, she would be stressed with packets of school to finish. Right now I am putting no stress on her and letting her do what feels comfortable. If that means laying down, sitting in her hammock chair, standing for little bits or taking a small walk, we try everything. Ugh. It is SO heartbreaking to see her suffer more each day. I really hope this med works! :grouphug: That would be so hard to watch your child suffer like that. I hope it gets better!! So glad you decided to give school a break. Definitely sounds like the right decision. Quote Link to comment Share on other sites More sharing options...
Lovedtodeath Posted September 27, 2012 Share Posted September 27, 2012 I'm sorry everyone for not replying right away. This has been a terrible week for us: lots of crying, depression, tension, and more pain. We have really been pushed to a limit emotionally and physically. We have done lots of prayer and reading posts by people like yourselves and talking to family and friends and more doctors opinions. We decided, after 4 hours of crying and pleading by my daughter, to finally try the medicine the rheumatologist prescribed. So far the side effects have been bad, but she wants to keep on trying. I just keep praying that I am making the right choices medically. I also did talk to dh and just said we are not doing school until we get this under control. Praise the Lord I am homeschooling. I am so blessed that I chose to pull them from public school a couple years ago. If she were in ps right now, she would be stressed with packets of school to finish. Right now I am putting no stress on her and letting her do what feels comfortable. If that means laying down, sitting in her hammock chair, standing for little bits or taking a small walk, we try everything. Ugh. It is SO heartbreaking to see her suffer more each day. I really hope this med works!will pray for you and your daughter. yes thank God you are homeschooling Quote Link to comment Share on other sites More sharing options...
ELITEANDLOVINGIT Posted September 27, 2012 Share Posted September 27, 2012 No injury. Started months ago with just a small pain at the spine on the bra line then has spread since then all over her back, shoulders and neck. We have seen an orthopedist specializing in the spine, a rheumatologist, pt, etc, etc. There is no pain management specialist anywhere near where we live. I assume she has had an MRI and they have a good idea what is causing the pain? She has been seen at a large Regional Children's hospital? Assuming all this I will share my story. My daughter is a cancer survivor, she was quite young (Kindergarten) when we were finishing treatment but we still had to deal with steroid pulses, spinal taps, tingly toe neuropathy, etc... and the lot. Eventually we did find a rhythm to her pain and sensitivities; based on that we made life and learning fun. For example on chemo day (IV, IT, begin Steriod Pulse) we would basically do nothing but party after her sedation because she was hungry and that would be our last good day for 4 days. For the next two days after chemo we would hunker down and do art and things that were relaxing; very little reading because with the pain she had increased noise sensitivities which is common regardless of steroid use when in pain. She couldn't tolerate TV or read alouds. So by about day five she would be coming down and that is when we could get in worksheets and other work again. It was a bit of a shuffle, but doable...again she was quite young. This was typical any time her counts dropped or we had some other hiccup as well. In our situation I think it was easier because, we did know the pain would end...I can't imagine what is like to not know. With an older child I wonder if a IPAD or Tablet computer would be better so that they could do work in bed when they wished and felt up to it. When she needed to she could completely tune out everything play Pandora in the background and do Math and Reading Apps galore. It wouldn't look necessarily like traditional learning, but I do feel it would be learning all the same. Defiantly take on the pain first and then worry about the learning. I always tell parents to keep looking...if you don't find answers with the 1st, 2nd, 3rd, 4th, 5th, 100th, visit keep checking until every part of you is at peace with what you are hearing from your physician even if it isn't in your nature to do so. I like MRIs and PET scans these days, prior to Abby I was a "homeopathic didn't even give a Tylenol" mom, now I see a balance in both types of medicine. It is an exhausting and infuriating process that makes you feel completely helpless. You will get through this. Keep digging. God is always with you..always. Praying for your family. Quote Link to comment Share on other sites More sharing options...
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