Singlemom1's picture
Singlemom1

Doctor won't give referral.

Hello all.  I'm new to this boad and am seeking some advice.  My son is 3 yrs. old.  There is a family hystory of heart disease, my grandfather, my father, and myself all have heart problems.  My son was diagnosed with a heart murmur when just newborn, but they said it was probably benign.  He has had horrible sleeping problems since he was just newborn that have gotten progressively worse.  I've taken him to the doctor countless times about his sleep problems with the only result being that he recommended giving my son natural sleep aids.  My son will lay awake in bed fidgeting for hours because he is so nervous, and many nights will only have approx. 5 hours of sleep. (he has no caffeine and I've tried cutting out all sweets, etc.).  Now that he is getting older, he also has some other symptoms, such as shying away from physical activity, getting tired easily, and on the rare occasions when he has been at a play area and actually starting running around and playing like other children, he will start sweating, but his skin will be icy cold to the touch.  I have of course told his doctor all of this.  He has had this doctor for nearly 2 years.  He did send my son for an EKG at one point which came back fine, and did nothing else.  At my last visit with my heart specialist, my son went with me and I asked my doctor about some of these symptoms.  He replied that this did not sound normal, unlike the pediatrician which said that these symptoms were absolutely normal and I was just being overworried.  My heart doctor then asked to listen to my son's heart, and immediately heard the heart murmur that my son's current pediatrician has never heard.  At my son's last visit to his pediatrician, I specifically asked for a referral to a pediatric heart specialist that my heart doctor had mentioned.  My son's doctor flatly refused to give me a referral, saying there was 'nothing at all wrong with him'.  He didn't even listen to my son's heart at this visit.  I can't take my son without a referral because of his insurance.  I feel frustrated and helpless, as there aren't a lot of options for pediatricians in the town where we live.  What should I do?

 



SnglDad's picture
SnglDad

Ask your cardiologist if he knows of a good pediatrician. Who knows he may play golf with one who would refer your son. The question is not what should you do, but rather , what are you willing/able to do? If it means going to the next town to find a doctor who will listen, then that is what needs to be done. You could call a pediatric cardiologist and tell them of the problem you are having, and maybe they can tell you of a doctor they work closely with who would refer your son to them. This is your child, there is nothing more important, leave no stone unturned, do not accept "no" for an answer.

lakedweller's picture
lakedweller

My son was diagnosed with a heart murmer when he was three, my pediatrician said it was not a big deal,it is quite common and he could take part in physical activity as safely as any other child. He is 8 now, also gets clammy and is not at all sporty, he has never had a problem with sleep though. You obviously don't trust your childs doctor and who can blame you, you need to get your son a new doctor. He is your son, and any concerns you have should be addressed properly. Try not to worry, I am sure your son will be fine, but you have to get a new doctor.

acitez's picture
acitez

Call your insurance company directly, explain the situation. Don't ask for their approval; drive to the nearest children's hospital or teaching hospital, show up at the emergency room and sit there until somebody examines your child.

Ask for a letter from your specialist to the insurance company or to your pediatrician, or both. Call your state's medical board and lodge a complaint against the pediatrician. Get the help you need, document everything, and be ready to sue the pediatrician AND the insurance company to recover your expenses. Being unable to do something because of insurance is a fallacy. You just may have to pay for it out of pocket, which may mean you go bankrupt.

It's only money.

Singlemom1's picture
Singlemom1

Thanks Sngldad and Lakedweller. That is very helpful advice. I will start looking for different options tomorrow and will hopefully be able to find a different doctor for my son. Lakedweller, that was especially interesting to hear that your son gets clammy as well. It helps to reinforce what I suspected about my son.

Singlemom1's picture
Singlemom1

Acitez, that is helpful to know about the insurance company. I wasn't sure if they would be willing to work with me or not. Unfortunately, the insurance isn't a fallacy, as I don't have the money up front to pay for a doctor, and I already declared bankruptcy. :)

acitez's picture
acitez

I'm sorry about the bankruptcy. For people who do have access to credit or savings, you can get whatever medical intervention you need. I don't know if your insurance company will work with you, but a pediatric or teaching hospital still might, especially if it is a non-profit. Non-profits are required by law to provide a certain percentage of charity care.

How is your boy doing?

concerned mom's picture
concerned mom

Get the murmur ck'd by another physician for sure, especially if it runs in your family. Take the others' advice, and do what you can to find a new pediatrician for your son. I don't like the fact that this current dr is brushing off your concerns. This is your child for God's sake. You might also want to look into sleep centers and pulmonary specialists at your local hospital. If your son is having trouble sleeping, his breathing cld be affected due to asthma, sleep apnea or another breathing problem. Sleep centers monitor patients while they sleep to better understand their sleep and breathing patterns. Pulmonary drs ck the lungs to determine if there's difficulty breathing.
Both my boys and I have slight heart murmurs which also run in my family. The dr said they're nothing to worry about, and never have any of us experienced the symptoms you've described. W/ me, however, I was told to take an antibiotic before going to the dentist to prevent any spread of infection to my heart. That's the only precaution, so it's not that bad. That's why based on what you described, I automatically thought of this possibly being a breathing problem related to some other cause.
Do whatever you can to get help for your child. Never accept no for an answer if you're not comfortable w/ a situation. This is your child, and you have to do what's best for him. No one can tell you otherwise. I wish you and your son all the best.

Singlemom1's picture
Singlemom1

Thanks everyone. I switched doctors and got a referral for my son the very first appointment. Amazing what a difference just one doctor can make.

acitez's picture
acitez

HOORAY!