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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Thank you Karen for your reply.

I gave him a nice warm bath yesterday. Trouble is the bathroom is of course upstairs and it really hurts him to walk up the stairs. Then of course he has awful trouble getting into the bath and sitting down. He has to keep his leg straight, he cannot bend it normally.

When we saw another consultant a few weeks ago, he wanted to see exactly what he could and couldn't do, so that he knew how best to help him and so he could see how bad it was.

When he tried to get him to sit crosslegged on the floor he just couldn't do it, and he burst into tears. I thought my heart would break.

We are going to see a pain consultant on Thursday so hopefully he can give him something that he needs, which of course is a nerve pain blocker. If his pain could be controlled of course it would make his life a little easier. He cannot go to school at the moment because of this. Plus he will have to sit on a hard chair all day, and that is out of the question.

I'll post back when I've seen the pain man. Thanks again for your reply Karen. I honestly appreciate it.

Jane. xx
before she decides simply to "tell" him NOT to limp, she(or one his other docs,even his GP can refer him for the MRI) NEEDS to truely find out just what the heck is actually causing it, you know what i mean? i still don't quite understand how they could come up with a dx of RSD without ever even bothering to just fully look at his entire spinal with an MRI to rule out other causes. other posssibles, espescially at his young age could be much more responsible for what you are describing symptoms wise so far as just a pronounced 'limp'?

it sounds like you have done at least some research on RSD? what other actual possible RSD related symptoms does he have? right now i would really be pushing his docs for that full spinal contrasted MRI(just highlights things better than without it). once you actually see what it or is not going on in there,THEN it would be at least ruled out as a possible generator of his symptoms. if he is experiencing ANY level of real spasticity here, that MRI is even more important to try and rule out possible spinal involement which could be even at the cord level too.

you just really do NEED to know what is generating his symptoms at the base level. tho it is always a possibility that this is indeed RSD, other possibles are just much more likely that just need ruling out. the one thing that is also very possible here is that he could have been born with some level of possible congenital malfornation within that spinal area too, i was. it would indeed take that MRI just to see what could possbily be there. this can also occur within the brain as well. these two key areas could be generating alot of possible symptoms if something decided to pop in while he was being formed in utero. i ended up with a tiny glob of blood vessels growing with my spinal cord that i never knew even existed til i herniated a disc in my c spine and it was found on the MRI(i was about 40 years old). this is why this MRI just needs to be done soon. just to see if everything within that area is simply okay.

i do hope they can find the appropriate dx and the right types of treatments too. but just make certain that they are just looking at everything that could create those symptoms he is having first. you just really want the appropriate Dx in ordert to obtain the best possible treatments. please keep us posted, good luck, marcia
[QUOTE=feelbad;4041914]before she decides simply to "tell" him NOT to limp, she(or one his other docs,even his GP can refer him for the MRI) NEEDS to truely find out just what the heck is actually causing it, you know what i mean? i still don't quite understand how they could come up with a dx of RSD without ever even bothering to just fully look at his entire spinal with an MRI to rule out other causes. other posssibles, espescially at his young age could be much more responsible for what you are describing symptoms wise so far as just a pronounced 'limp'?

it sounds like you have done at least some research on RSD? what other actual possible RSD related symptoms does he have? right now i would really be pushing his docs for that full spinal contrasted MRI(just highlights things better than without it). once you actually see what it or is not going on in there,THEN it would be at least ruled out as a possible generator of his symptoms. if he is experiencing ANY level of real spasticity here, that MRI is even more important to try and rule out possible spinal involement which could be even at the cord level too.

you just really do NEED to know what is generating his symptoms at the base level. tho it is always a possibility that this is indeed RSD, other possibles are just much more likely that just need ruling out. the one thing that is also very possible here is that he could have been born with some level of possible congenital malfornation within that spinal area too, i was. it would indeed take that MRI just to see what could possbily be there. this can also occur within the brain as well. these two key areas could be generating alot of possible symptoms if something decided to pop in while he was being formed in utero. i ended up with a tiny glob of blood vessels growing with my spinal cord that i never knew even existed til i herniated a disc in my c spine and it was found on the MRI(i was about 40 years old). this is why this MRI just needs to be done soon. just to see if everything within that area is simply okay.

i do hope they can find the appropriate dx and the right types of treatments too. but just make certain that they are just looking at everything that could create those symptoms he is having first. you just really want the appropriate Dx in ordert to obtain the best possible treatments. please keep us posted, good luck, marcia[/QUOTE]

Well the only symptom of RSD he has is the limp, nothing else. He didn't have any major trauma just prior to the limp starting. He just seemed to wake up one day with it.

He had an MRI scan but on his hips and pelvis. No one mentioned his spine, although someond did say that if he continues to walk this way, his spine will end up curved.

I have tried to do what the physio said and get him to walk with one crutch but it's just so painfull for him, and since he saw her, he seems to be getting more spasms and they are getting more painfull. He really shouts when it happens.

I'm seeing the doctor again today, she's a great doctor and I'll mention a spine scan to her and see what she says.

This rhumatologist we saw was the one who diagnosed RSD. He was convinced that is what it is. Who am I to disagree? I'm just so grateful to have a diagnosis after all this time of wondering what is wrong with my son.

I will update you all later on when I have seen the doctor. Thanks again to all of you for your support and advice. It really means a lot to me. Cheers.

Jane.
believe me,while i can understand that basic "need' to finally get a real Dx of anything that is affecting our children, getting the wrong dx can in some cases be ten times worse. if this 'label' sticks they will never start looking for the REAL and underlying cause. basing a very complex and invloved Dx of RSD without ANY actual symptoms of it(a limp really would not be considered, just in and of itself, to be an actual symptom per se either)is just sooo insane to me that any real 'specialist" could even go there at all with this. if you have read about this, you also know that there simply ARE real actual symptoms present too that would even start a doc to even think this could even be RSD at all.

when it comes to any child suddenly presenting with a profound limp, there are just hundreds of real possible reasons for it to even occur that have to be ruled out with testing before you can truley Dx its origin. i am hjust wondering about the spasms you mentioned? does he have actual spasticity in those legs or 'just' spasming from time to time. if he has ever mentioned that his legs feel "tight" like a rubberband type feeling(ask him that) then this would lead morre towards actual spasticity which in most cases is from some upper spinal issue. it is just how the legs react when the spinal is incvolved at all at the cord level.

did you happen to notice just what his lower legs did when they did the neuro assessment on him where they take that little hammer and tap in under the knee cap area? if they merely did a slower bounce then it is not a spastic issue. but if he had what are called 'brisk' quickened or 'exagerated" type of movements then, it would be hyperreflexic and spinal related. if you do not recall this at all, you can try this yourself at home just using the heavy end of a butter knife? hold the blade end in your hand while just using that heavier end to lightly 'tap' that area right below the knee cap and just see how that reflex responds and let me know.

he just really truely NEEDS to have that MRI done and quite frankly it should actually be done with contrast from the brain on down thru his lumbar area just to REALLY see that area for what could be many many possible reasons for his one ad only true symptom. i honestly just cannot understand the thinking of this dr at all. this does not even make any real 'common sense" either ya know? if you yourself simply KNOW based upon what you have already read about symptoms that can be there and should be there and YOU just do NOT see them yourself, well, chances are pretty darn high that he simply does not actually have RSD at all. you just have to really look at the facts and be realistic about the potential for what a very wrong Dx made by a doc who i truley don;t think actually understands RSD at all himself labeled him with.

it took my neurosurgeon and my ortho like two entire months going back and forth based upon alot of different very obvious types of symptoms i had to finally agree that what i had going on in my extremely hot and swollen knee was indeed RSD. they already knew i had the sympathetic nervous system damage, and the vasomotor malfunction going on, then they removed all other possible generators for my symptoms by basic testing. that was when my real solid dx was made, after EVERYTHING else that could have possibly have been causing all my symptoms were just ruled out of the picture.

this just IS exactly what should be going on with your son right now hon, ALOT of testing and ruling out. its pretty basic stuff that has never actually explored potential areas that could simply be causing a profound limp in a child with no history of trauma. and one of the most common is some level of real congenital probem/defect/malformation going on that he was simply born with and it has now decided to show itself.

i just really do feel for you in all this. you are advocating for your son right now and that IS the best possible thing we can do for our children when we just KNOW something is not right in them. i had to go thru this crap when my youngest suddenly presented in liver failure and then had to have a transplant. i would just push like heck right now just to make darn certain that every possibility for this limp is completely ruled out with appropriate types of testing being done. these docs simply owe your child this much, ya know? that is what their actual JOB is.

please keep me posted on how things are going hon. i really just want to see him get the 'right' Dx, and not living with the wrong one while something else is going on and not being treated or fixed. just do whatever you feel you have to with these docs to make the right things happen. do not allow them to intimidate you either. believe me, many 'medical professionals' can make some whoppin mistakes since they are only mere humans like we are. take care jane, Marcia
Hi Marcia.

My son has had an MRI scan. Apparrantly it also scanned the lower part of his back and they found nothing. He has had a bone scan, and that found nothing. He has had endless blood tests, all negative. No one seems to know how this started.

The spasms I mentioned arn't in his legs, they actually occur in his hip. It's as if someone is standing next to him sticking a sharp pin in his hip all day, directly into a nerve. It really makes him shout.

It was a rhumatologist who diagnosed RSD. As soon as he saw him walk, or try too, that's what he said it was.

He's been poked and prodded and pushed around by doctors. He;s had his legs measured and allsorts of tests done. The next step is Great Ormond Street Hospital. We have an appointment for a few weeks when we return from holiday. Maybe they will be able to find the cause of this and maybe they won't.

If all these tests he's had have proved negative, what else could it be? The blood tests were to check for signs of infection and included tests for juvenile arthritis which was negative. At one stage he began to wonder if people thought he was making it all up and it was attention seeking.

His head teacher once suggested it was pyschosymatic!!

Once we've seen the specialists at GOSH I'll let you know what they say. I'm at my wits end. I just want my son back to the normal healthy active little boy he used to be. Now he's virtually crippled. :(

Thank you for all your support. I appreciate it very much.

Jane.
ah yes, the old "its all in your head" while the body does insane freaky things. gotta love that catch all diagnosis. this is the thing that most women actually get told when they are having insane things going on in their bodys that docs just cannot explain with their limited knowledge of certain conditions. its anxiety, stress or depression,(all in your head crap?)could not POSSIBLY be something else that simply was not tested for and actually found as a real cause.

the one huge thing you really need to understand here, and i really cannot fathom where this rheumy came up with this, is RSD symptoms are pretty distinctive in how they present. the one thing he is telling you IS NOT an actual true 'symptom' of even having RSD. it could be a SECONDARY type symptom from another area affected with it, (i limp badly but my knee HAS RSD)but that would have had to show itself in some form as RSD, you know what i mean? this Dx just simply does NOT have any underlying symptoms of RSD that would or even could create that limp in just the area he 'looked at while he walked?

a change in our gait, the way we walk is dependant upon nerves firing properly to even begin to move muscle. what that physio told you is much more accurate than that rhuemy. what NEEDS to be found out here is just what IS affecting the nerve firing up further in the spinal or the brain. honestly jane, just obtaining the brain down thru thwe thorasic level with an MRI would more than likely show a possible reason for that limp. he only has that one thing going on,ya know? no other symptoms or signs of any real condition/syndrome, espescially the very direct and specific types of symptoms that would have to be present to even BEGIN to actually Dx someone with RSD. that is what i am trying to really get thru to you jane, he does NOT show real true signs of RSD, period. that is the part that really bothers me so much about what you were told by that rheumy, no real symptoms there but heres the dx kind of thing? it just does not make any real sense with no actual symptoms to even back that up, at all.

like i mentioned in other posts, sudden limping in a child with no histroy of trauma has to be coming from something. its just not RSD. believe me, i do know how much you simply WANT and need that true Dx, but if this is not the actual dx, something else is going on possibly further up here that is NOT being treated or identified in him. this is not the time to simply 'settle". many many docs make wrong Dxes every single day(both my son and myself have had this occur with different insane conditons we are both dealing with). what they dx in any given patient is what they actually know or think they know. without any other testing being done in the other areas that could just be producing this one symptom, he simply cannot Dx a complex condition with nothing to back it up, ya know? but at the very least, just getting an MRI ON THE AREAS where it very easily could produce this type of sudden onset symptom? THAT alone will at least rule in or out the ohter possiblities here that this just could be stemming from jane. that is the really critical thing, looking at the other areas that can simply produce this type of symptom, period.

there are certain areas of the brain and the spinal cord that DO govern gait and what is called our proprioperception too. this is your ability to simply know where all of your body extremities are in relation to space when your eyes are shut. even with them open, you can still be "off" with gait, trust me on that one. i lost my proprio in my legs from my spinal cord damage and it does effect my gait and my balance too. how is his overall sense of balance right now? there are just so many areas(spinal tracts among other fibers) within the actual spinal cord that simply carry ALL of our body system governing signals to our brains where the messege ends up in the right place, it gets interpretted correctly and a signal is fired back thru that same tract that tells the body what to do. anything that impedes that critical 'flow' can create alot of different problems. this could be upper motor neuron issues or a single motor nerve within that cord area that is being impedded. like i said, that physio has more on the ball than the rheumy certainly did.

for now, i would push forward with this new facility you are going to. just exactly what is this hospital? what is the speacilty there, or is this just a good teaching hospital? that would be ideal for trying to identify problems and Dxes, espescially the more rare or strange types of stuff. this is the type of hosp i went to and my son as well. they have teams of docs that all specialize in very specific areas of medicine. that team approach is really great since they have like every type of specialty and can call in any of them at any time to eval a patient if they suspect a particular area may be involved with something. then that team does their own testing and eval to see whats up. a great teaching type hospital would be ideal for what you are simply trying to get a real true dx that actually matches your sons symptoms. while i know what it is like for our children to have to be poked and prodded when they should be out riding their bike and playing baseball, your son NEEDS the proper Dx so he can do that stuff again, ya know?

right now, i would kind of put that rheumys insane opinion off to the side and look at this as if you were never actually told that. they NEED to be concentrating on ALL possible areas that simply could be creating this profound symptom(tho i would mention this to any new docs and see what their reaction is to RSD actually being the reason). that is what is going to get you an "appropriate' dx, and not a mere guess by a rheumy doc who really is not trained enough to obviosly even make that type of real dx in any patient. the symptomology just is not there jane. thats what you need to keep remembering. all you have to do hon is just read what the possible real symptoms actually are and what you are NOT seeing in your child right now. it just comes down to very basic common sense ya know? i just have no true idea as to where he came up with that one, not at all. it just does not 'fit'.

i would just push to have that MRI done and see what you find out. i hope this hospital will be the place to really find the real reason for your sons condition. someone should be able to just track this back to the real source with the right types of testing. i just truely feel for you and your son and all you have already been thru. i want to know that he just gets what any patient deserves, the right Dx along with the appropriate types of treatments or therepies to make them better and happy. please keep me posted jane. hopefully these docs will find out the real Dx soon. marcia
this is the first time you mentioned that numbness going on jane. that DOES matter here and does show at least some level of impairment within nerve flow. this is what NEEDS to be tracked back to the sorce. this very much CAN be stemming from something further up in the spine. they only scanned that very limited lumbar area of his spine when they did the hips. this is why he just NEEDS that MRI done on the thorasic(the level above that lumbar/hip area) and the c spine and brain too just to make certain ALL possible generators are covered here.

one thing you can do, and i would highly recommend you just do this with every single doc you have seen so far, and with ALL test results too, get ALL records. espescially from that rheumy doc who seems to think that limping is RSD. i would LOVE to know just what his actual Dx was based upon myself. when you leave any doc after an appt, they do make their "clinic notes" about every visit? this is what you need to obtain from this guy and read thru this to see what he has there to even BEGIN to try and back up that type of Dx. obtaining ALL records that are just generating here on all his ongoing doc visits and testing being done just need to be gotten and then kept in a type of expanding folder that you simply take with you to any and every appt you have for your son. all of his test results and other docs impressions would be right there in that folder for very easy access at anytime. this helps in sooo many ways when you are just dealing with ANY ongoing or chronic type of condition. my son has his file and i have mine too. when docs staff tells you they will 'fax over' records or test reasults to another doc? trust me, it does not always get done for you and then you are sitting with a new doc and no real paperwork to go over. having my own records has saved what would have been a wasted appt and turned it into something much more productive a few different times when someone simply did not do their job like they said they were going to.

i am really glad that you are going to a much much better place that will more than likely also dosmiss that RSD as the underlying issue here and simply DO the appropriate types of testing on him. the brain as well as the reast of his spinal just NEEDS looking into,espescially with an actual numbness going on there. that IS definitive nerve affectation at either the spinal or cord level. there IS a particular type of test they can do just to really check out how much nerve flow is actually going on to that innervated muscle. it is called an EMG/NCV test? it is a bit painful to do, but honestly jane, this WOULD show exactly how much real innervation is flowing there and track it back to the place where the impairment actually is. just having numbness in any area at all IS direct nerve affectation. of some degree somewhere along the run of that nerve there. like i said,its just a matter of tracking that back to the area of flow impairment right now.

there are just sooo many other possibilities here for his symptoms that just need ruling out with appropriate types of testing right now in order to just find that elusive dx of what is creating this in your child. there are certain types of problems like MS that would normally show itself with changes in the brain that needs to be ruled out among other possibles. i am in no way saying he actually has this going on, but this is what i mean by 'other' possibles here, thats all.
i really am sorry if this is all really overwhelming for you, believe me i can relate to that. but the really crucial thing here right now is simply getting a PROPER dx that actually matches HIS symptoms so he can get the appropriate types of treatments and therepies. this just IS your main goal right now jane.

i am hoping things go well at that hosp appt. please do keep me posted on all things. at some point, someone WILL figure this all out with the right types of testing and really seeing the symptoms that ARE there. when he has that appt tomorrow with the physio, just start picking her brain for what she feels may be going on further up to even create what he is feeling. the one thing she also needs to be keeping in mind here is if there just IS a flow impairment going on there, it will create alot of problems with simply trying to 'right' the signals til a true reason is just found for the nerve loss in the first place. good luck jane, marcia
hi jane, sorry it has taken me awhile to get back down here to answer you. i am actually very very relieved that they FINALLY got that RSD dx off of him. there simply were NO symptoms of it in the first place. the one thing i am really starting to wonder here tho is whether or not he actually does have some level of real 'dystrophy' type of a condition just not the RSD type? his motor functions from what you have stated seem to be becoming more of an issue? tho this can also be stemming from that type of tricyclic med he is on too. he seriously needs to be seeing a good pain management type of doc for his ongoing pain control. he should not have to be suffering like this and dealing with that type of side effects when there just are better ways to manage pain without severely impacting other areas. the tricyclic he is taking is the same one i was placed on many years ago to try and prevent the horrid migranes i was dealing with well before anything was actually invented that simply aborted the migrane syndrome. i felt like a zombie on it and also had a very hard time staying awake during the day, despite the fact i ONLY took it at night. those meds just hit pretty hard. there just are better ways to try and manage his type of pain without the major side effects. is this even working for him at all?

alot of the many many different types of dystrophys really impact muscle and motor functions too. this is just one possible here out of what could be MANY different reasons for what he is dealing with here tho. did he actually 'miss' the chair when he fell or what EXACTLY caused that? you just mentioned that the 'chair slipped out from under him" the chair would not have moved, unless his foot hit it or something else moved it, ya know what i mean? knowing the exact reason stated by him that actually caused him to 'miss' that chair could be a symptom of a certain loss of what is called your proprioperception? this is basically kind of how we 'see' our own body parts in relation to space. if he actually 'thought or saw", in HIS eyes that the chair was actually directly under him when that happend but missed it, that would indicate an affect of the proprio being involved here, that is why i am asking this at all. meaning he actually, according to how he saw things really felt or assumed that chair was beneath him but it actually wasn't kind of thing? this just could be a symptom that should be told to whenever you can get to that new doc at that hospital. if this of course was how it all took place.

i DO totally agree with you that this is not in the actual hip that is creating all this and more than likely much further up either within that cord area/spinal or within his brain. the thing here is your actual proprioperception(if this really is what is involved in part here) is governed by the cerebellum within the brain and also within a particular spinal tract that is connected to it that runs thru the actual cord called the spinocerebellar tract. mine was damaged along with two other tracts in my cord and i have lost a certain level of proprio in my legs too. so i do know what that feels like and how you can very easily tend to 'misjudge' foot placement or where you 'think' things are in relation to like my feet or legs too. its just very insane to feel it.

i just do NOT understand why his doc cannot actually even see or understand the very real NEED here just to fully look at all areas that could create the symptoms he is displaying. most docs would WANT answers for any patient,espescially when it is actually a child who is having to suffer like he is with this crap. you may want to find another doc other than this one who really does NOT actually have the overall best interest of his patient at heart. do you know just what the hold up actually is for him getting into that hospital? you either need to find a new doc who will take this as seriously as you do and get the spine and the brain scanned or you may have to wait til you can just see someone at that hospital who actually WANTS to try and find the true underlying reasons for his continuing pain and symptoms. but at the very least for now,getting him to a good pain management doc would certainly help HIM the best right now.

i just really do feel so badly for him and for you too just having to deal with all this BS let alone dealing with having a sick child with no real reason/Dx for his pain and suffering. hopefully you can get him into that hospital much sooner vs later. those two areas just need to be looked into much more in depth just to try and rule things in or out as the possible source for all this. thanks for the update jane. i hope the next one is after you get an MRI done on him. it just should NOT be like this just to obtain a real Dx in your child. just keep hanging in there hon, hopefully things will start moving ahead soon. marcia
hi jane, i really am so sorry i have not getten back to you yet, had alot of other crappy things to deal with with me kind of thing? honestly at this point i would be DEMANDING that that one full spinal MRI be done asap. tell his current doc you are sick and tired of watching your son have to suffer and watch his overall function decline with NO ONE even wanting to help in finding the reasons/answers? this is just getting to the 'sick' stage here with this ongoing wait crap. i would be dam angry at this point if i were you, and that anger can get you into places trust me, i would start calling that stupid hospital or just start showing up in their ER til someone starts to actually DO something for him. this really has gotten to the ridiculous stage with his crappy level of care. you are his only advocate and its up to YOU to just start demanding someone do their job for your son. believe me i had to get really pissed off a few different times when my son was going thru liver failure and some of the staff was treating him like crap? that when the mommy fangs came out and believe me people heard about it. things i never would have demanded for myself, well i had no problem demanding better for my son, espescially when certain things that needed attention were being blown off, that just got me even angrier.

you simply need to have HIS actual main primary doc give a dam and actually HELP you get him to the best possible place for a good solid Dx. that IS a primary docs job by the way, to also help advocate for the patient and the best possible care? his primary doc,at any time can simply refer him for that needfed MRI. this is who you have to convince right now just to get that very real need met. i would simply ask him what is wrong with my son? if he cannot give you that answer then demand that he find out by starting with a very obvious MRI just to actually see inside to the possible areas of involvement. all ypou have to do here is simply present the overall LOGIC OF THAT NEED FOR THE MRI. you cannot argue with logic and common sense in that way, ya know what i mean?

i just feel so awful for you and your son right now i cannot even begin to tell you. since being nice and waiting patiently has not worked for you, its time to try another route,get angry. demand what he needs and you just KNOW what has been needed. this would at least get that ball rolling with new information at the very core of what could be casuing all of this for him. i am in no way saying to yell and scream at everyone but getting just plain angry where you simply KNOW that your child is not being treated appropriately, or at all yet? that is what you need to use as the main catalyst here to get what he needs done and to get someone to simply take this seriously, other than you and i?

i would just be hitting that hospitals ER OFTEN if they have one. i am not too certain just how this is set up. but getting at least in those doors can't hurt ya know? use everything you can to just get his main doc to push for you and him(their job??) here too. how is he doing right now? does that hospital actually have an ER you can take him too or is this more like a clinic setting? i would either be calling them on a daily basis til they finally do the right thing here or start showing up at their freaking door every day til someone takes notice? this has just taken soo much time with nothing even begun to be done for him yet its sickening and just not right at all either. at this point jane, you just do whatever you have to do here to get his very real needs met hon. make certain you are keeping a journal of all his ongoing symptoms and when they also popped in too. this will help with an eventual Dx if they can ever actually get something done for you. i wish you luck jane, please keep me posted and do not hesitate to get angery and use that to your advantage. what has been going on with your son and no one appears to want to simply do their jobs for him is just SO WRONG. Marcia
[QUOTE=feelbad;4096318]hey jane, just hoping you are still out there and see this. i am concerned and wondering how things are going for your son, and of course you too. marcia[/QUOTE]

Hi Marcia, thank you for your concern. You have no idea how much it means to me, bless you.

Well my son has had to go back to school. Apparantly the doctors, seem to think there is no reason why he shouldn't be at school, despite the fact that he is in constant pain 24 hours a day, and having violent spasms in his hip. The back of his left leg from his hip, down to the back of his knee is now completly numb. I actually tried to pinch him to see if he could feel it, and he felt nothing.

I have heard nothing from any specialists at all. I am just in limbo, waiting and waiting. Meanwhile my son is suffering.

I have to say that his friends were very pleased to see him today, so I'm hoping that lifted his spirits a bit. He has had butterflies in his tummy all weekend because he's so nervous about going back to school again.

I needed a letter from my doctor to say that he is physically unfit for school at the moment. She wrote a letter but it didn't say that. Now I have had to send him back because if I don't I shall get taken to court. Great eh?

As far as my requests for another MRI go, well forget it. No one will agree to it. I want one done on his spine, but I get told that it doesn't make sense for anything there to be causing it, or no it can't be that. How the hell do they know? They don't even know whats causing this.

My son asked me a question recently. He said: "mum, do you think I'll ever be able to run again"? What could I say? I don't know. :( He still cannot smell or taste anything by the way.

As soon as I get any news from anyone I will post here. Thanks again for your concern Marcia. Your a star.

Jane. xxxxx
i really just cannot believe what this is creating for your son and you too and no one seems to think anything is wrong here and DO SOMETHING??? anything that is either impacting his spinal cord above that level of that hip or even a possible issue within his brain(just looking at his lack of smell?) could very easily be involved and just simply needs to be scanned to hopefully find that reason. all of his symptoms just need to be tracked back to where they are being generated. i mean its not rocket science ya know? what you need is to find one doc, just one doc to help advocate for him too. once you can get what should be his actual primary doc, with you on this to help, that is when things will get done. having any good doc on your side just helps TONS to get things tested and open those doors to other things he needs as well.

i just cannot believe with all he has as symptoms and what can be 'seen' that no one will help a freaking child like this. its mind boggling really. if his current primary is not helping you here i woulkd seriously look for another who will. it IS supposed to BE your main primary doc who does all the coordination of care for any patient they care for. if ANY testing needs to be done,they should, just based upon symptoms, simply send any patient for a badly needed look at areas of possible involvment with any condition. he simply NEEDS that MRI to be done from the brain on down the spine at this point.

have you ever just tried showing up in the ER of that hospital you are wanting to get into and have him evaled when he is having the pain and the spasming? just getting him to be seen there and into the doors would up the chances that SOMEONE would see the very real need here for that testing to be done. this is just sooo sick jane i cannot even begin to tell you how so not right this situation actually is to me. i really would try finding another ped doc or primary doc for him to be seen and evaled by and explain everything you have been thru and then ask them for their help. like i said, getting that ONE doc to really see the true need to HELP him with first getting that MRI done is where you need to be right now. advocating for their patients just IS part of any primarys job. its that simple. you could also keep calling and calling that hospital to see when you can see a good neurologist there too. i would call and call and just bug the hell out of people til someone finally listens to you and simply DOES their job for him. this has just gone on for wayy too long now and he does deserve to be treated approriately for his pain as well as the approproiate type of ongoing care too.

there just HAS to be some actual caring type of doc who would just do right by him ya know? sometimes you have to go thru many stupid docs til you hit on that 'right one' for whatever your needs are. it IS worth the effort you have to put into this just to find that perfect doc. trust me, he or she IS out there, you just have to be persistant and keep pushing til you get to that doc. not every doc can be that stupid not to see how something further up can simply impact many things further down? its common sense espescially when it could be either spinal or brain related. getting him into see a ped neurologist would really be ideal. but get that better primary ped first, they should do the rest for him.

i wish i could offer you much more than words jane. i just cannot fathom how stupid the docs are there and that none of them can see that something is just very wrong with your son that NEEDS diagnosing here. just keep hanging in there and pushing whoever you have to to get this very real need met for your son. hopefully you can simply get him into see a new more knowledgable and caring primary care doc who will do their job for him. i wish you lots of luck again with this jane. just push and keep pushing. please let me know how things are going. marcia
Jane, I was reading up on your posts. Sorry to jump in.
I've had rsd for almost 9 yrs now. Thats a whole other story, but I am curious.. You said your son has blood in his stool? When I use to work at a drs office the one thing we learned to ask was.. is the blood in the middle of the stool or just on the outside. If it in inside then it could be internal bleeding, but if its the outside its usually from hemrroids etc. I am sure he's on a lot of pain meds that will cause constipation. Just a thought. I am so sorry to hear your son going through this.. It so hard.. I know. After yrs of He**.. I just want to tell you. There is hope. I have rsd in all four extremities. and after receiving lidocaine treatments I am finally back to work fulltime. The rsd will never go away for me.. I was dx way to late.. 4 yrs into it.. Your son has a much better chance of full recovery.. The only advice I can tell you is fight.. Go to different drs if need be.. I can't tell you how many drs I went to before being dx. I knew I wasn't going crazy.. and for a child to miss out of going to school etc. He 's in pain.. Being 11.. the last thing he wants to do is sit around.. so you just keep jumping to different drs if thats what it takes.. I wish you so much luck.. being that he is only 11 thats so good to hear.. kids usually have a great chance of full recovery.. once they are dx.. and its usually from intense physcial therapy..
Michelle
Well we've been to Great Ormond Street Hospital in London. Now they have deicded he's got CPS. This they say could be caused by him falling over and hurting himself, (he didn't prior to this we told them) or by simply twisting awkwardly. So what this really means in simple English is they havn't got a clue. Also I told them how every time he has a spasm he sneezes. This the doctor said is unrelated??!! How can it be unrelated? It only happens when he gets a painfull spasm, no other time.



We have to go back in 2 weeks to see the crisis team. They deal with pain management. They say he needs physiotherapy otherwise his joint will get stiff. I understand that but he does move it! He walks around a lot and he's back at school now. (I was threatened with legal action if I didn't send him back)

Sometimes it feels as if no one is listening to me. Because I'm not a doctor or an expert, what the hell do I know!! I asked again for an MRI on his spine. The doctor is adamant there is no problem with his spine. Well if they don't look how the hell do they know!!

I shall ask again and again and again until someone listens to me. If I'/m wrong and there is nothing on his spine, great!! No one will be happier than me to be wrong.

I think in a lot of cases like this the cause is never found. All that be done is pain management. Well at the moment he's got nothing.:(

I'll let you all know how we get on in 2 weeks. Thanks for being here.

Jane.
honest to god jane, i just cannot believe the ignorance of the docs you have had to see and not just even ONE of them at least doing that one badly needed MRI on him? it is just common sense ya know? if they were not so dang expensive you would be better off getting one done and paying out of pocket for the dam thing. at least it would finally just be done and it would show or rule out alot of possible things too. this is just sick,really sick. but you DO have to keep bugging the living hell out of them til someone finally listens to you. unfortuently i had to do this with all my sons crap and some of the issues that came up. it just sucks,i know.

so what does the abbreviation of CPS stand for exactly? i am just not too familiar with that term. at least they are offering a good pain management doc for him which he simply really does need. maybe you can work on THIS doc and see if he will finally refer him for that MRI. i would be really telling them how much he just really does need at this point, a scan from the brain thru the lumbar, from top to bottom. considering the upper symptoms and the lower, it would just once again make common sense to just look there in all these places for ANYTHING that could just be there ya know? there are just some conditions that do show themselves within the brain itself like MS does with white matter lesions? this is just so stupid i still cannot believe everything you and espescially your son have had to just suffer thru here. it just really breaks my heart for the little guy. not to mention how this impacts YOU as the mom in charge too. it can drain you after awhile so be careful there jane. but i would just keep on scremin til someone just does what should have been done by now. its a simple easy "baseline' type of test when espescially there is unknown reason for symptoms. its just something docs would normally just 'do' in that case. it just shows alot of the needed areas in the best way to see whether or not something is just right or wrong. this is whats sooo freaking stupid in all this.

i am really hoping you can at least get thru to someone at this pain docs office to simply order the dam MRI be done, finally. just do NOT let them intimidate you and keep pushin jane. eventually someone will listen. it just takes the right doc who just cares enough to WANT to know and truely help your child. hopefully this new doc will be the one. let me know what you find out hon, and hang in there jane. good luck with the new doc, marcia





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