My daughter has been experiencing chronic pain since September, 2010. It all started with sudden onset pain in her chest. She was told she had pleurisy and then when the pain didnít improve she was admitted into the hospital and told she had costocondritis. With no improvement, she was released after 24 hours and told to take motirn. He pain then spread to her back as well as her chest...She has been seen by a pulmonologist, and she ordered a sleep study which showed some moderate sleep disturbances. Not full blown sleep apnea. The pain then began to spread to her hands, fingers, wrists, knees, ankles and feet. She has had a full rheumatological workup and was found to be positive for the HLA B27 genetic marker that signifies Spondolyitis. She was then diagnosed with spondolyitis and pain amplification. She did an in-patient chronic pain protocol at Phoenix Children's hospital for 2 weeks and was released with the message that she needed to give the "new" drugs time to build up and provide her with some relief.
Following her release from the pain program, she continued with weekly psychology sessions, 3 times per week PT appointments and drug therapies of neurontin, elevil, chlonidine patch and flexeril. She continued to experience pain and in fact got worse following her release.
She was then readmitted into PCH for pain management and further testing. During this week long stay, she was told she doesn't have any form of arthritis (spndolyitis) and that diagnoisis had been in error. They said this time around that she has fibromyalgia and complex pain. She was elevated to the highest possible dose (1200 X 3/day) of the neurontin and they switched her from the elevil to cymbalta. With the start of the cymbalta, she got a headache that she has had ever since with no relief. The only thing they would allow her for the head pain was Tylenol. She was again sent home and told she needed to once again allow the medicine to build up in her system and do their job. Upon reaching the max dose of the neurontin and keeping it there for 2 weeks, the doctors declared the neurontin had failed and they were going to taper her off the neurontin and taper her on to lyerica. She is now completely off of the neuronitn and is at 75 mg in the AM and 150 mg in the PM of the lyerica with the ultimate dose they are heading for of 150 mg twice a day. She continues to get worse and is now yelling out in pain due to sharp stabbing chest and knee pain.
IN the midst of all this, she has seen a homeopathic doctor who has tried accupunture and doesn't agree with the fibromyalgia diagnosis. She mentioned it could be Valley fever or Lymes disease so we have had her tested for both of those. Her lymes came back negative and her valley fever came back indeterminate so they re-tested and the 2nd test came back negative.
Her pediatrician just realized she has something going on with her blood pressure...in the beginning of all this her pressure was significantly high. We were told repeatedly that was due to her being in pain. Once they started the chlonidine patch, her pressure dropped to normal and is sometimes even low. They just realized 2 weeks ago that her pulse increases by 30-60 points upon standing and have suggested POTS syndrome. Of course the doctor just said something is happening her and told us to keep track of her pressures laying down and standing. I found the information on-line about POTS.
We are at a complete loss. She has gone from a high achieving honor student that plays multiple sports on a competitive level with lots of friends to a child that can't attend school for more than a few hours at a time, can no longer play her beloved softball and doesn't spend time with her friends because she is in so much pain.
The pain doctors say their job is to teach her how to "live" with the pain. How does a child live with extreme pain that she labels as a 9 out of 10 on a daily basis. There has to be something else going on here. We feel like her rheumatologist has completely given up on her and her pain doctors look at her as if she is just another difficult case they aren't sure what to do with.
Here is a list of her symptoms: Can anyone see something they recognize that the doctors are missing?
Back pain in all areas
Pain in both hands, wrists and fingers
Pain in both knees, she now often limps
Pain in both ankles
Intermittent foot pain
Intermittent elbow pain
Blood pressure issues
Generalized weakness (the doctors don't agree on this because she is so strong due to her sports) - we know it's there though
She has been admitted into the hospital on 3 separate occasions in the last 5 months and each time they tell her they are going to be able to reduce her pain. They say they are going to give her something for the pain and each time another doctor contradicts the other doctor and says they will not give her anything for the pain since she has been on the complex pain protocol and they refuse to use any type of pain killer. Her pain tolerance is very high and she doesn't scream out and cry like many other children would. Do to this they have labeled her as stoic and say she is depressed and that it is not really the pain that is causing her problems. Her psychologist knows her the best out of all these doctors and she says not only is she NOT DEPRESSED; she is dealing with all this better than she could even imagine. Her MDs will not listen to the psychologist and keep focusing on her lack of facial expression and lack of pain response to their direct manipulation. She will only tell the doctor on an exam if something hurts if they ask her specifically, she wonít cry out in pain with each touch. I have told all her doctors this and they still refuse to ask her with each touch if it hurts!
We are so frustrated!!!! Can anyone see something familiar in this very long winded story?
I will say this: Clonidine messed up my son and and one of the meds she is on my son had and it caused severe migranes. I would consider a childrens hosp. Other than one she is in. It is ridiculous that your child has to endure this. I do know docs are not god and pain is hard to understanda being that they cant feel it themselves. My goodness. I will pray for a break thru...but you are doing what any good mother would do and that is to keep pursuing until an answer is found. Sad that even the pain clinic may not know after they deal with many with pain. Contact a good minister that has gifts of prayer laying on hands for healing...its ligit and real with right one. I was healed of cancer years ago with prayer and faith and delivered from cigs. On the floor with prayer and faith . Wish you blessings and your daughter relief.
Wow, my heart breaks just reading what you wrote about you little girl!!! I don't have any advice but please be careful with the Doctors, for they are human and make mistakes.. In other words it's scary for her to continue to be falsely diagnosed and on all types of per scripted drugs. She needs a children specialist medical unit. I can't imagine your pain seeing your daughter like this. My prayers are with you and your family, most important your daughter.
Last edited by Administrator; 09-15-2012 at 08:55 PM.
First I am so sorry your daughter is dealing with so much pain. I know you said she tested negative for lyme but where was she tested/seen for this? Do you know what test she had and did you get a copy of the results? If not you should get them. I don't know where you live but you may want to get her to an LLMD.
Maybe come on over to the lyme disease board and post the symptoms etc. that are going on with your daughter as there are alot of people on that board with alot of knowledge. I have Lyme and they have helped me alot.
i'm definitely not a doctor, but besides the weight gain, all the symptoms you described about your daughter are the exact same symptoms i had just before i was tested for valley fever. i actually had my first blood test come back as negative, but a subsequent test came back as positive. i'm so sorry about what your daughter and your family are going through... those tests aren't always correct, and neither are doctors' diagnoses. i'd say use your instinct and demand testing for whatever you think may be wrong with her.
My thoughts go out to you and your daughter--no mother should have to sit back and watch their child suffer.
My only suggestion to you would be to seek out medical care at a different hospital. You may have to travel a distance, but you should check out a major teaching hospital. You may also want to obtain all of her medical records and start sending them out to other doctors in different parts of the country.
If Lyme is a possiblility, than I suggest that you go online and research Lyme Literate Doctors here in the NorthEast. I believe the State of Connecticut has a few.
My other thought would be, has any doctor thought of checking out your daughters spine. Is there a possiblility that something is pushing on a nerve root or within the spinal canal.
I do not know if you have been referred to a neurologist, but that may be another option to check out.
If you get all of the medical records, review them yourself, you know the whole story and you may pick up errors in history taking. You also may pick up information that doctors felt they did not need to tell you, because they are considering it a normal finding. You should also check the side effects of all the medications that your daughter has been taking, she is a young girl and alot of those medications are not tested on childen only adults.
Unfortunately you are now going to have to assume the role of medical detective and start searching the country for similiar cases and start sending her records to outside doctors to get their opinions.
Do not give up the fight to find a doctor who can give your daughter some relief. I will keep you both in my prayers.
Last edited by Administrator; 09-15-2012 at 08:55 PM.