View Full Version : Help for a desperate mom please!!

02-17-2007, 05:35 PM
Hi all, I'm so happy I found this forum. I am at my wits end trying to help my just turned 13 year old daughter.

Here is our story. My daughter has always been an honor student and an athlete. Approximately 2 years ago when she was 11 she started having abdominal problems, pain mostly...no real diagnosis. Over the last year and a half she's had trouble with headaches, nausea and fatigue and has missed much school. Our real troubles began around the 1st of January when she started a migraine that wouldnt stop. We were referred to a nuerologist who gave her all sorts of meds over a continuous 3 and a half week period of CONSTANT migraine. The child would yell out in pain at night, nothing stopped the pain. Finally after week three and a half, the pain eased, and we had one day of smiles. The following day, her joints started hurting, beginning with her hip. Soon to follow, she felt that her ankles were "broken" and broke down in tears.....then the knees, wrists, fingers. We went back to the neurologist who said give it a few days, no meds, and a "we'll see" attitude. Days passed. The pain worsened. The doc ordered blood profiles, and she was ANA positive 1:80. We were referred to a pediatric rheumatologist who cant see us before JUNE!!! her pain continued to increase, settling mostly in her left knee to the point that covers cannot even touch it, or she screams. Actually, she screams intermittently every couple of minutes day and night with the sheer pain of her knee. We are now at week two. I took her to the orthopedic doc who said its out of his league, but ordered more blood work. Her Complement C4 was low, but not terribly low...at 12. Pain continues...horrific pain...... So now the ped. rheumatologist moves our appt up to March 27. Meantime, my child continues to miss school (over 35 days now), continues to be in such pain it is affecting her mental disposition to the point I really really worry for her. I'm banging down the pediatricians door, and all any one can respond to me is that since her sed rat is normal....its not fitting the pattern of rheumatoid. They keep trying to find a "stress" cause to all this!!! I'm in no mans land, and I've GOT to help my child. I know my child is sick. Very sick.

My concern too is that since my child was on all sorts of anti-inflammatory with the migraine (which i also understand can be associated with auto-immune disease), including prednisone and shots of massive ibuprofen, ketaprofen...etc.... would that not help keep her sed rate in check??

I'm possibly not even making sense here. Any thing anyone could input to me would be so greatly appreciated.

Oh! also she has a blush on her cheeks, a couple of bumps along the crease of her cheek/nose line but not much. Her legs also turn almost purple from shins to feet when she sits in the doctors office waiting to be examined. The doctors have all commented on this.




02-17-2007, 06:34 PM
My first thought reading this is whether your daughter might have RSD (reflex sympathetic dystrophy) - based on the intense pain and the color changes in the skin. Although lupus can cause widespread joint pain, the intensity of your daughter's pain really suggests that it might be neurological rather than arthritic pain. Pain that originates in the nerves itself is usually severe and doesn't respond as well to pain meds.

RSD is a neurological syndrome that causes intense burning pain, changes in the bone and skin (coldness, color changes, etc.), swelling, and EXTREME sensitivity to touch, to the point where the pressure of a sheet or blanket can make the person scream. It needs early intervention and treatment by someone with experience in dealing with it. If any of this sounds like your daughter, you can get more information from the Reflex Sympathetic Dystrophy Syndrome Association website - www.rsds.org - they have fact sheets you could print out to discuss with her doctor.

The main thing right now is getting her pain under control - then the doctors can do some more specialized tests to look for lupus or other autoimmune causes. Prednisone and nsaids could affect her sed rate, so the fact that it's okay now doesn't rule out a problem. Do you know if they tested her sed rate before she was treated with any of the drugs - that might be a more accurate number. You should also find out if her doctors have checked her c-reactive protein - it is often high when there is active inflammation. Ideally, she should have an ultrasound of her legs to make sure her circulation to her legs is okay - a clotting disorder could cause some of the symptomss you are describing. But right not it would probably cause a lot of pain, so you could ask her doctor for a d-dimer test instead - it just involves drawing a blood sample and testing it for blood clot fragments.

Since you can't get into the pediatric rheumie yet, you could call the pediatrician and insist that your daughter be seen by a pain management specialist as soon as possible - even if it means admitting her to the hospital and calling for a consultation with a specialist. That much pain is putting unbelievable stress on her body, and it needs to be addressed right away. If the pediatrician is not responsive to you - I would seriously consider taking her to the emergency room of the best hospital in your area - where they would have to take her pain seriously.

I wish there were something more we could do to help - please let us know what you find out. It is awful when your child is hurting and you can't help - I hate seeing a child in pain.

02-19-2007, 05:33 AM
Thinking of you and your daughter. I hope she can get some relief soon.

I've been reading a lot of your posts and you have so much good information, it's unreal! Keep up the good work.

02-20-2007, 09:40 PM
thank you so much for your reply. I really really appreciate it. My child definitely has the intense pain, but no swelling or sweating that was indicated for RSD. Still I will definitely discuss it with the neurologist. my child continues to be in severe knee/joint pain...we are going on 2.5 weeks now that she is housebound. Mentally dealing with the pain of nearly 4 weeks of a migraine, one good day, and now this is really getting to her. She went back to the neurologist today and he continues to say that he believes her symptoms are the beginning of a "calogen vascular" disease, meaning auto-immune. He believes the color change in her legs when she is in a cold examining room is related to this.

He has scheduled a bone scan for her this thursday morning. He said that it would reveal areas of inflammation? anyone know anything about a bone scan and how usual it would be if indeed the diagnosis is autoimmune?

thanks again. this whole situation feels surreal. I feel so helpless in the face of all she has been through and continues to go through.


02-20-2007, 10:43 PM
Notagain -

I hope the bone scan is helpful. I don't know exactly what you are having done, as th eonly bone scan I have ever had was to test for bone density.

But, please know I am thinking of you and your daughter and hoping for the best for you both.

02-21-2007, 08:24 AM
I've had several bone scans - they are very helpful to see if there is any kind of infection or inflammation in the bone itself that is causing the pain. Usually, it involves getting an injection of a special "tracer" drug that is well absorbed by the bones, then waiting anywhere from an hour to several hours for the drug to be completely absorbed, then lying on a table while the scanner goes over you to look for "hot spots" in the bones where the drug has concentrated. Other than the injection, the test is non-invasive, but it can be very uncomfortable to have to lie still on a table for long periods, especially if you are already in pain. So you might want to talk to her doctor or the radiologist beforehand about giving her some extra pain meds or a sedative so she can get through the test without pain.

The reason it's so important to distinguish between infection and inflammation is they can cause similar symptoms, but the treatment would need to be different. If she has inflammation in her knee, then it might be possible to inject a steroid into the joint - but if she has an infection, then steroids might make it worse. I know you want her doctors to do something as quickly as possible, but it is good that they are being cautious on this one thing, because you wouldn't want her to start on steroids or immunosuppressants - which are often prescribed for lupus - if she has an active infection. but you can and should insist that her doctors take her pain seriously, and give her enough pain control. If that means calling in a pain management specialist then her doctors should be open to doing that. This must be unbelievably stressful on both of you - I hope you are able to get some answers soon.

02-22-2007, 09:30 PM
Your post reminds me exactly of my daughter. She had migraines and extreme pain in her knee that I had to help her off and on the toilet. She bawled when anything touched her knww. She slept all the time and never ate. She had this for 4 weeks and one day just disappeared. After waiting for 2 months, we saw the rheumatologist, which was a waste of time. He immediately referred us to a nephrologist and a diagnosis of Lupus was made immediately. she is on many drugs but has been absolutely fine for 9 weeks now. My advice would be to get blood tests (perhaps urine tests also). If there is any trace of blood or protein in her urine, to see a nephrologist right away. He saved my daughter. I am brand new to this forum too and just discovered it. Maybe it can help my 13 year old daughter also. I hope this helps!

02-25-2007, 04:41 PM
everyone thank you so much!!

we are still battling this excruciating knee pain. The bone scan didnt reveal anything but the discoloration in her lower legs, and purpling of her feet seem to be getting worse.

theprinces...thank you so much for your input. I dont know how much more of this my daughter can take. The pain is unbearable. its been 3 weeks now, and I'm still having to help her bathe, etc. the pain comes whether or not she moves, stabbing pains that take her breath, more when she moves, but constant even when she doesnt.

Im all the more frustrated because her pediatrician has suggested its psychological, even though he's only seen her once in this whole time. The nuerologist says the red/blueing in her legs is "callogen vascular". whatever the heck it is, this is NOT NORMAL!!

I'm going to look up nephrologists in my area. We are absolutely desperate. Please feel free to pm, I'd love to discuss this further with you!!!!

02-25-2007, 06:30 PM

wanted to say YES you are right she is in desperate need of a pain management specialist and the pediatrician got us an appt this wed with one at the local hospital.

You all have helped immensely!!

02-25-2007, 06:42 PM
Thank goodness - I hope they will be able to help - just sorry it has taken so long!

02-26-2007, 10:36 AM
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. :mad: 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! :D

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! :mad:)! :? :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! :? :mad: 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! :mad: Even my Colon X-Rays pick up the Spina Bifida/Occult Spinal Dysraphism! :mad:

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! :mad: 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! :? :?: :mad: 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.

02-27-2007, 07:32 PM
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!


02-28-2007, 06:00 AM
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.

03-04-2007, 03:59 PM
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!!

03-14-2007, 04:42 PM
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.

03-14-2007, 04:50 PM
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?

06-18-2007, 09:17 PM
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!

11-29-2007, 07:12 PM
I was hoping you would post back about your daughter, How is she? ANy diagnosis?