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Thread: Help for a desperate mom please!!

  1. #11
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    Hi Notagain

    I am SO sorry to hear about your daughter! :cry:

    I am sixteen and I can assure you that I have been there with the "It's all psychological" rubbish myself. Infact, I was forced to see a Psychiatrist, who confirmed that there was absolutely nothing wrong with me (psychologically, I mean). After ten minutes of me talking to him, he was like: "There's absolutely NOTHING psychologically wrong with you! You're not even anxious or stressed!" I am still seeing him because he is so wonderful and fantastic!

    Don't worry too much about the Bone Scan. I had a Full Body Bone Scan in November last year, which was ordered by my Spinal Surgeon because I was experiencing severe back pain (and still am). I have a Scoliosis (skew spine), Spina Bifida Occulta/Occult Spinal Dysraphism (a part of one vertebra in my lower back is missing and a few other vertebrae are malformed), Scheuermann's Disease/Scheuermann's Kyphosis (the front of my upper spine is not growing as fast as the back of my spine, so the vertebrae are "wedge-shaped", with the narrow part of the wedge in front. The wedge-shape of the vertebra creates an increase in the amount of normal kyphosis/front angulation of the thoracic spine) and Hypotonia (low muscle tone) in my back (and in my feet)(I have many others bone and muscle irregularities in other parts of my body as well). However, although the Bone Scan picked up my Scoliosis, it failed to pick up the Spina Bifida Occulta/Occult Spinal Dysraphism and the Scheuermann's Disease (which is now routinely picked up every single time I have a Chest X-Ray and keeps getting worse when I should be growing out of it! )! :? :x It was SO annoying! How could it miss something so "flipping" (excuse me for the colloquialism, please) obvious?! Every single X-Ray that I have EVER had of my spine has picked up the Spina Bifida/Occult Spinal Dysraphism and the Scheuermann's Disease/Scheuermann's Kyphosis is even picked up on my Chest X-Rays! :? The Radiologist writes two or three lines on my lungs and heart, etc. and about TWELVE lines on my spine, commenting on all of the different vertebral malformations in my spine! Even my Colon X-Rays pick up the Spina Bifida/Occult Spinal Dysraphism!

    So, to be perfectly honest, I really do not know how accurate this Full Body Bone Scan actually is?! The other problem with it, as my Spinal Surgeon explained to me, is that it can only tell you WHERE the problem is, not WHAT the problem actually is. My mother was really shocked and surprised that it didn't pick up my other back problems too!

    Plus, I keep getting visible inflammation in my lower back and terrible back spasms, which can be easily felt by my Paediatrician/Paediatric Cardiologist, who is often shocked at how bad they actually are!

    Another annoying thing, is that I will have VERY VISIBLE inflammation, but my E.S.R. (Erythrocyte Sedimentation Rate) and C.R.P. (C-Reactive Protein) levels will be normal! Infact, at the beginning of 2006, I had enormous swelling and inflammation in my right knee (you had to be blind not to be able to see it!) and the skin over the knee cap was warm and very red. My ex-G.P. couldn't believe how bad it was! She was horrified to find out that I hadn't even had an accident; that I had just woken up with a huge knee (and this was before I had Epilepsy, so it wasn't a seizure-related injury). She sent off bloods, including E.S.R. and C.R.P. and they came out normal! :? :?: HOW DOES THAT WORK?

    I sincerely hope that they find out what is wrong with your daughter and that the pain management specialist can help her with her excruciating pain! I know how hard it must be for you to see your daughter in so much pain and to feel powerless to be able to stop it because I have often heard my mother up all night crying when I am very ill or in terrible pain.

    Please just know that I am praying for you, your daughter and your family and for your daughter's recovery, health and deliverance from her severe pain.

    Keep well and God bless you.

  2. #12
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    Default ILoveHistory

    oh my goodness darlin, you have REALLY been through it!!! Thank you so much for your input and very kind words. Yes, it is absolutely gut-wrenching to watch her in this pain. Every day I get up and think, maybe it will be gone today, and everyday its the same....intermittently screaming out in pain, day and night, as she tries to lead a normal life between the acute pain episodes that come every few minutes. The pain itself never leaves...feels like something is "squeezing" her knee she says, then the stabs come. Leaves me feeling sick to my stomach just watching.

    this whole "psychological" thing is really maddening too. I just bet it must have felt "insane" to you to have to justify that you were genuinely in pain!!! I'm really hopeful that when we see this doctor tomorrow she can help us try and cope until we can get a diagnosis and hopefully some relief.

    I'm left feeling that no one in the medical community really cares. You try and tell them the degree of pain she is in, and they think you are exaggerating...or they just want to move you on, figuring it will go away. I can only imagine the battles each of you has had, living with an illness that isnt so easily diagnosed, recognized or even....believed.

    Right now we are on survival mode. Sharing your story with us, helps so very much.

    Thank you again and sending you hugs as well!


    notagain

  3. #13
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    Hi Notagain!

    Thank you so much and everything is only a pleasure!

    I sincerely hope that this new doctor can help you; it is always the most frustrating thing, trying to get the medical profession to believe you when what they see wasn't written out in detail in their textbook or they have forgotten about it. But, as I always try to explain, people are not textbooks and no-one will always be identical in symptomology! :x

    Please let us know how it goes... I will be praying for you, your daughter and your family.

    Keep well and God bless you.

  4. #14
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    Default discoloration in hands and feet

    I was hoping you had some anwers by now. Please don't give up. You sound like you are a good advocate for your daughter. Keep it up!

    Ashley has dicoloration in her hands and feet when she is cold. It is called Raynaud's Phenomenon. It has to do with the blood vessels. Her SED rate came back completely normal also. Your daughter sounds so much like my daughter in her symptoms. I don't mean to be discouraging but it sounds like Ashley all over again. I would get the urine and blood tests needed like I said in my earlier posts. Lupus can reveal itself in so many ways and it is a treatable condition. Please see a nephrologist, if not only to rule it out. We have a great one in Michigan and diagnosed her immediately. There are so many blood tests they can do, it will make your head spin!

    As for your pediatrician, I would consider finding another one!

    Hope this helps!!

  5. #15
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    Default nephrologist

    thanks to all again. my daughter continues to be in pain, still two weeks out from seeing the specialist, but my rheumatologist (I have fibro) agreed to see her. She at first diagnosed her with JRA (juvenille rheumatoid arthritis) and ordered another round of blood and urine tests for me to take to the specialist and put her on neproxin (sp?). I was feeling a little more upbeat until they called me today and said that she was still ana positive and that she had some abnormalities with her urine screen. I immediately thought of your daughter, and how you said that it was the neprhologist who diagnosed her. She has protein and I think she said calcium in her urine, and i had to take her back to the lab for them to repeat the test, and then they are going to do a 24 hour screening, and then if still bad, send her to a nephrologist.

    my child is becoming very depressed. i feel like this will never end.

    thank you all so much for your support.

  6. #16
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    Default help is on the way!

    Hang in there! Ashley is ANA positive as well. She hasd blood and protein in her urine and since she started on the meds, everything is going well. I will pray that you find answers. I know how frustrating it is. Where do you live? I live in Michigan and can give you some awesome doctors names. When is her appointment? Any idea?

  7. #17
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    Default How is your daughter?

    I have been thinking of your daughter often and never see any updates. How is she doing? I've been praying for answers - hopefully you have some by now. Please update! THANKS!

  8. #18
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    Default Any news?

    I was hoping you would post back about your daughter, How is she? ANy diagnosis?

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