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Living With Fibromyalgia - Online Support Group

Daughter diagnosed with AMPS

#1

Hi Everyone, My 15 year old daughter was diagnosed this week with AMPS this week. We know little about this. We are glad to finally put a name to all of the terrible symptoms she's had for the past 3 years. Although I reported all symptoms to her Pediatrician - even switching Dr.s to no avail. They both said the same thing "she just has a virus". Well she does have several other health conditions which may have confused the issue but should not have. Two of her health conditions Acute Migraines and Vocal Chord Dysfunction may be related to the AMPS according to the Rheumatologist that diagnosed her but would not explain her other symptoms. In his opinion she should have been referred much earlier. The sad thing I was never referred I asked for a referral out of desperation!

My daughters complaints are that her bones hurt, her joints ache, she's always tired even though she's just slept for 12 hours! She just complains of a general sick feeling. Unfortunately this happens quite frequently and the aches and pains are fairly constant.

We are interested in hearing from anyone familiar with AMPS and how they have managed it. We would like to hear about successes and failures in treatment as her Dr. said this can be a trial and error treatment situation. She will be treated as an outpatient with Physical Therapy, her Psychologist, the support of other medical care professionals as well as a brand new Pediatrician who is familiar with this syndrome. Her father and I will of course do anything we can to get our lively, fun loving girl back. She is so miserable she also wants to do whatever she can to feel better.

We look forward to hearing from you.

#2

Hi . I stopped by to let you know that I am thinking the best for your daughter and hope that you will find effective treatment. I can imagine , being a mother myself how heavy your heart must be . All the best .
HUGGGGGGGGGGGGGGS!
Suzie

#3


Hi Thanks for the encouragement hopefully someone out there will be able to give us some input! Have a great day and a big hug right back atcha!
suzie said:

Hi . I stopped by to let you know that I am thinking the best for your daughter and hope that you will find effective treatment. I can imagine , being a mother myself how heavy your heart must be . All the best .
HUGGGGGGGGGGGGGGS!
Suzie
#4

My 17 year old son was diagnosed December 23rd. He has been on Homebound instruction all year. He doesn’t have the strength or stamina to go to school. We’ve been backtracking to figure out what the trigger could have been- seeing a therapist for almost a year now. He was first diagnosed last year with anxiety and depression after my mom’s death. Then he had a severe case of mononucleosis over the summer. It took forever to figure out that it was mono, as he was misdiagnosed and treated for more than a month for pneumonia. He then developed jaundice. I happened to tell all this to my rheumatologist, and he agreed to see him. After one visit and a lot of bloodwork and medical history review, he diagnosed AMPS. We’re now in the process of getting a referral to Children’s Hospital of Philadelphia. The pain in his spine is the most severe symptom, but he’s also tired all the time and has general pain all over his body. It’s the worst thing I’ve ever seen a teen have to go through.

#5

Hi @onemom.

My daughter is 11. We were first told she had a virus. She was then diagnosed with AMPS. We have an appt at CHOP next month for VCD. And she just started getting migraines. She currently has unexplained aches and pains and generally “I just don’t feel good”. She’s missed the last 3 out of 4 weeks of school.

It sounds almost identical to what your daughter is/was going through. I was just reaching out hoping you would see this. I was wondering if your daughter was still suffering from these conditions and what kind of experience you’ve had.

Whether you can reply here or in private message, I’d love to hear from you. We’re really grasping at straws.

Thanks,
Michael