Guest guest Posted September 8, 2008 Report Share Posted September 8, 2008 Hi! I am . I am a SAHM to Ashleigh (8) & Noah (4). Ashleigh has fine & gross motor skills delay. Her white matter is abnormal. She has constant leg pains & they are getting worse. She also has swelling & warm to touch in her left knee. Both of her legs are bruised & these bruises take a while to heal up. Does anyone here have a child with pain? We have taken Ashleigh to see a rheumatologist 2 years ago, but he could not make up his mind if she has arthritis or not. We were referred back to him after we had Ash to an ortho dr. We see him Thursday. We are at a lost. We don't know what we can do to get her pain levels down. She has difficulty sleeping & her behavior is not good. We have a second opinion appt tomorrow in another state with a neurologist to see if he can help us. I would love to hear from parents, who kids sound like Ashleigh. Any help would greatly be needed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 The swelling and warmth are strong indications that your daughter does have juvenile arthritis. I do not know why your rhuematologist couldn't be more decisive on a diagnosis. Seems that your little girl could have been on some type of anti-inflammatory to aleve her pain, and the risk to joint damage is nothing to be put off for this long. The orthoped is generally seen asap to rule out issues, so it seems odd that the rheumy didn't refer you 2 yrs. ago then make a dx. I would get a second opinion rheumy right away so that your daughter's treatment can begin as soon as possible. > > Hi! I am . I am a SAHM to Ashleigh (8) & Noah (4). Ashleigh > has fine & gross motor skills delay. Her white matter is abnormal. > She has constant leg pains & they are getting worse. She also has > swelling & warm to touch in her left knee. Both of her legs are > bruised & these bruises take a while to heal up. Does anyone here have > a child with pain? > > We have taken Ashleigh to see a rheumatologist 2 years ago, but he > could not make up his mind if she has arthritis or not. We were > referred back to him after we had Ash to an ortho dr. We see him > Thursday. > > We are at a lost. We don't know what we can do to get her pain levels > down. She has difficulty sleeping & her behavior is not good. > > We have a second opinion appt tomorrow in another state with a > neurologist to see if he can help us. > > I would love to hear from parents, who kids sound like Ashleigh. Any > help would greatly be needed. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2008 Report Share Posted September 20, 2008 I wanted to thank those who welcome us. We took Ashleigh for a second opinion at Cleveland Clinic. Ash was diagnosed with Cerebral Palsy. We have been told it could be this, but I am not sure. Finally an answer. This neurologist said her leg pains are caused from her CP. The way she holds herself. Her knees are bent when she walks, stands. This is causing her knee is swell, but we are not sure. Ash saw her rheumatologist, who put her on Naproxen to help her with the pain & the swelling. It could be from arthritis, but not sure. How long did it take for the arthritis diagnosis? Her pain level has gone down with the Naproxen. Thanks. -- New here..... Hi! I am . I am a SAHM to Ashleigh (8) & Noah (4). Ashleigh has fine & gross motor skills delay. Her white matter is abnormal. She has constant leg pains & they are getting worse. She also has swelling & warm to touch in her left knee. Both of her legs are bruised & these bruises take a while to heal up. Does anyone here have a child with pain? We have taken Ashleigh to see a rheumatologist 2 years ago, but he could not make up his mind if she has arthritis or not. We were referred back to him after we had Ash to an ortho dr. We see him Thursday. We are at a lost. We don't know what we can do to get her pain levels down. She has difficulty sleeping & her behavior is not good. We have a second opinion appt tomorrow in another state with a neurologist to see if he can help us. I would love to hear from parents, who kids sound like Ashleigh. Any help would greatly be needed. ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hi , My daughter Maggie also has CP. She was not diagnosed with Systemic JIA until 18 months ago.....but has had symptoms since she was very young. In fact her Primary Doctor was just talking about it the other day, she thinks it was apparent as early as age 3. Maggie has a Baclofen Pump in her stomach that has a catheter that comes around from the pump and pushes into her spine, into the Thecal fluid. This helps the spasticity and takes away a whole lot of the muscle pain. Her CP has nothing to do with her joints really, but as with everything else I am sure each child is different. A child can have a very mild form of CP without a whole lot of problems. Just know that it is really hard to get a doctor to look further after a child has one major diagnosis. Because Maggie was diagnosed with CP AND OI it took us forever to convince her doctors that she had other things going on without them constantly blaming the other two diagnosis's for her troubles. She was born with OI and CP, later we found out that she has Primary immune deficiency that has essentially caused her to have Systemic JIA and Uveitis. It is not commen for a child to have this ma > From: <backfullofpain@...> > Subject: Re: New here..... > > Date: Saturday, September 20, 2008, 9:56 PM > I wanted to thank those who welcome us. We took Ashleigh > for a second > opinion at Cleveland Clinic. Ash was diagnosed with > Cerebral Palsy. We > have been told it could be this, but I am not sure. > Finally an answer. > This neurologist said her leg pains are caused from her CP. > The way she > holds herself. Her knees are bent when she walks, stands. > This is causing > her knee is swell, but we are not sure. > > Ash saw her rheumatologist, who put her on Naproxen to help > her with the > pain & the swelling. It could be from arthritis, but > not sure. How long > did it take for the arthritis diagnosis? Her pain level > has gone down with > the Naproxen. > > Thanks. > > > -- New here..... > > Hi! I am . I am a SAHM to Ashleigh (8) & Noah > (4). Ashleigh > has fine & gross motor skills delay. Her white matter > is abnormal. > She has constant leg pains & they are getting worse. > She also has > swelling & warm to touch in her left knee. Both of her > legs are > bruised & these bruises take a while to heal up. Does > anyone here have > a child with pain? > > We have taken Ashleigh to see a rheumatologist 2 years ago, > but he > could not make up his mind if she has arthritis or not. We > were > referred back to him after we had Ash to an ortho dr. We > see him > Thursday. > > We are at a lost. We don't know what we can do to get > her pain levels > down. She has difficulty sleeping & her behavior is > not good. > > We have a second opinion appt tomorrow in another state > with a > neurologist to see if he can help us. > > I would love to hear from parents, who kids sound like > Ashleigh. Any > help would greatly be needed. > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 Hi , I guess I will call this " Part 2 " not sure why but only part of the message sent!! (long day,doesn't surprise me!) Anyhow, it just is not usual for a child to have more than one diagnosis so it can complicate things sometimes, especially when trying to diagnose something that is already so difficult to put a name on! Hopefully you guys will get some answers soon! Guess I had better sign off for the night. Once I start spelling words wrong and cutting off entire emails in the middle of things, it's time to go! Take care and Hugs from Iowa! Diane and Maggie age 11 (OI,CP, Systemic JIA,Uveitis, PIDD) > > > From: <backfullofpain@...> > > Subject: Re: New here..... > > > > Date: Saturday, September 20, 2008, 9:56 PM > > I wanted to thank those who welcome us. We took > Ashleigh > > for a second > > opinion at Cleveland Clinic. Ash was diagnosed with > > Cerebral Palsy. We > > have been told it could be this, but I am not sure. > > Finally an answer. > > This neurologist said her leg pains are caused from > her CP. > > The way she > > holds herself. Her knees are bent when she walks, > stands. > > This is causing > > her knee is swell, but we are not sure. > > > > Ash saw her rheumatologist, who put her on Naproxen to > help > > her with the > > pain & the swelling. It could be from arthritis, > but > > not sure. How long > > did it take for the arthritis diagnosis? Her pain > level > > has gone down with > > the Naproxen. > > > > Thanks. > > > > > > -- New here..... > > > > Hi! I am . I am a SAHM to Ashleigh (8) & > Noah > > (4). Ashleigh > > has fine & gross motor skills delay. Her white > matter > > is abnormal. > > She has constant leg pains & they are getting > worse. > > She also has > > swelling & warm to touch in her left knee. Both > of her > > legs are > > bruised & these bruises take a while to heal up. > Does > > anyone here have > > a child with pain? > > > > We have taken Ashleigh to see a rheumatologist 2 years > ago, > > but he > > could not make up his mind if she has arthritis or > not. We > > were > > referred back to him after we had Ash to an ortho dr. > We > > see him > > Thursday. > > > > We are at a lost. We don't know what we can do to > get > > her pain levels > > down. She has difficulty sleeping & her behavior > is > > not good. > > > > We have a second opinion appt tomorrow in another > state > > with a > > neurologist to see if he can help us. > > > > I would love to hear from parents, who kids sound like > > Ashleigh. Any > > help would greatly be needed. > > > > > > ------------------------------------ > > > > Quote Link to comment Share on other sites More sharing options...
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