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Jbrown0210, January 13,  2021  7:08pm EST

I believe my 13 year old had a stroke but no one will listen

I apologize for the long post! 

we have been to countless doctors and they refuse to do any further testing. Going as far as to say she has conversion disorder. 

She had no issues after she hit her head. She was totally fine other than a bump. I believe 72 hours after her concussion, she suffered an acute stroke.  She had a "thunderclap" headache, that put her on the floor, couldn't open her eyes in the light.  Her speech was slow, she mixed up words or couldn't get the right word out, her right pupil was larger than the left.  She was lethargic and slow to move or respond. 

we went to the ER and they did CT.  It was negative.  While there, she developed a twitch.  She has never had a twitch before.   We were sent home.  

the next day, her twitch got worse. We went to a pediatric ER and they essentially said she was faking.  I finally got them to do an MRI and EEG. Both negative. We went home and were to wait for neurology. 

two days later she was having trouble reading with her left eye. She had a lot of pain behind the left eye.  We went to the children's hospital.  They again said she was faking, refused to do any testing and sent us home.  I begged them to check her neck and they refused.  

she has since developed more symptoms. She had a period of about 5 hours where she had trouble walking, couldn't stand on one leg, her gait changed and she started slap stepping.   The foot issue is still occurring intermittently. 

she has had three instances of chest pain. Where it felt like she was being stabbed whenever she breathed in.  One of which happened at the ER.  Her 02 dropped to 80 and she slumped over. They said it was a machine malfunction read. 

she now is having problems with her feet turning purple and they hurt to even stand. I brought her to her pediatrician and they said to see neurology. Neurology says there is nothing wrong, see cardiology. I brought up my concern about her potentially having had a stroke initially and may be having TIA now, that's why the symptoms resolve   She said nope   If it was a stroke it would have been on the MRI. I can't find any information on pediatric strokes not appearing on MRI.  

We are set to see cardiology Friday and I did get neuro to order the MRA and neck MRI  since they are just doing it to appease me, there is no urgency and she won't have them for a few weeks.  I'm just super worried they missed a stroke and it's going to keep getting worse or permanent damage.   I'm tired of having my concerns dismissed.  I don't know how else to advocate for her. 

2 Replies
  • AHAModerator
    AHAModerator, January 14,  2021  8:56am EST

    Good morning,

    I'm so sorry that this is happening to your daughter. This sounds like a very stressful experience for you both and I can't imagine what she must be feeling. Unfortunately, I am not a medical professional so I recommend that you continue raising your concerns with her doctors. I can also share some resources to help you learn more about Pediatric Stroke. Please keep us updated on how she's doing, we're rooting for her!


    The AHA Team

  • AmbassadorMK
    AmbassadorMK, January 18,  2021  1:54pm EST

    Hi JBrown,,

    It sounds like you have been through quite an ordeal. I wasn't sure when you had the MRI done, but I would definitely see a different neurologist. I am glad you are getting the MRA and neck MRI done. I may be able to recommend some good pediatric neurologists depending on where you live. Do you mind sharing what city you live in? You are right to keep asking questions. I can share with you that I recently talked to a mom who has a 10 year-old that suffered a stroke around the time of birth. It took her 10 years to finally get a neurologist to assess him and give the correct diagnosis. You are doing the right thing by pursuing a diagnosis and I know it won't take long once you find the right doctor.

    Please let me know if you need a medical provider recommendation. There are quite a few good pediatric neurologists in the U.S. that understand strokes in children. Good luck and keep asking questions!


    Ambassador MK

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