Struggling to get pediatrician to follow through on getting answers

Posted by amandab2021 @amandab2021, Feb 10 7:26pm

I have a 4 year old daughter that has been having odd symptoms for a while. She was born at 35 weeks with a 9 day NICU stay due to preemie apnea. She has significant farsightedness in her left eye that seemed to get bad out of nowhere. We had no indication she was struggling with the eye until about 3 weeks before she was diagnosed with a prescription of +2.75/+6.50. She has been in glasses for over a year and a half, patched for a while and her prescription has been increasing. About 4 months ago she started complaining of seeing spots in her bad eye and has really struggled with it even after an increase in prescription. In the past couple of weeks she has been complaining of headaches in her forehead, "polka dots" in her eye and rubbing it frequently. She has always been my independent child and wanted to get dressed without help, do everything for herself. But lately she has been getting up in the mornings almost in a daze. I tell her to get dressed and she moves a little and then just doesn't. She has horrible environmental allergies and has been under the care of allergists since she was 2. She was recently diagnosed with asthma even though her allergist is not confident in the diagnoses. She has flares of higher than normal heart rates but her O2 usually remains pretty steady, oddly the albuterol actually seems to level out her heart rate instead of increasing it. She often wakes up shaking like she is cold but is toasty and warm with no fever. Lately she has had a lot of complaints of restless leg symptoms as well as leg and foot cramps. She has had an echo which was normal, been tested for anemia, and had a tonsillectomy/adenoidectomy due to obstructive sleep apnea. We are now struggling in school due to memory, comprehension and attention issues. All of her doctors that see her regularly are pushing for her to be sent to a pediatric neurologist however we having issues getting her pediatrician to get the ball rolling. I am not sure how long to let the headaches go on before I get concerned since they are getting in no hurry to figure it out. Her school has called me everyday this week because of her complaining of headaches.

@amandab2021 – I know there are always going to be worries when you have a premie growing up.
Did she see ped ophthalmologist recently ?
I agree that she should see a Peds Neurologist to evaluate her current complaints. I don’t understand why the pediatrician hasn’t referred her to Neurologist yet.
Do you need a referral to see a specialist?
You will just have to insist on getting the referral. Your daughter needs it.

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@amandab2021 – I would like to add my welcome to Connect along with @astaingegerdm and other members. @astaingegerdm gave some really good advice. You might also find this Mayo Clinic article helpful – Advice on Second Opinions: https://connect.mayoclinic.org/champions/advice-on-second-opinions/

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@amandab2021 I'd like to extend my welcome to Mayo Clinic Connect. You are concerned with your daughters health, as the school is. The last thing you need is a barrier placed by a pediatrician. I'm sorry this is happening.

It would normally be best to work the situation out between you and the provider but I think I would have a hard time trusting that this provider/pediatrician has you daughter's best interest at heart. How do you feel about this? I know providers are scarce but have you considered changing providers? Have you considered making a complaint? You have good cause, especially with the school calling daily.

Have you let the school know that the pediatrician won't give a referral and discussed the issue with the school's social worker/therapist/psychologist? Part of their job is to direct you towards resources.

It sounds like you need and advocate. Your daughter would very likely qualify for a child county case manager due to her health issues and the issues she is having accessing medical care. Has anyone ever mentioned this to you?

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