What would you do.

[Katie T]

So September 14 My 3yo had a seizure. I wrote a post about it if you want more info on what it was like. So we went to a ped neuro on 9/21 and she did a VEEG. The next morning she told me the results were normal (and was VERY rude to me and snotty) I was in tears because she was so rude. My gut was telling me that all was not fine and I insisted on a MRI which she was really against. So We did the MRI 10/4 and I get the results back that it is normal which is GREAT but in reading the info it says that she is ordering the MRI because of seizure and abnormal findings on the EEG. 

Upset I call and talk to her nurse and she said that she had slowing in the brain (I honestly don't know what that means but I guess it is "normal" after a bad seizure) and she had possible epileptic seizures during the EEG but since I didn't hit the button she is not going to worry about it. I told her I fell asleep around 12 the morning after (and did call back and leave a message telling the nurse again). But why not call when they found something different that what she initially told me. 

So DD "spasms" that she was having for a week and a half after the EEG increased drastically (after dying down to a more normal level around 11 days post seizure) and so I called to let them know and they were not concerned. I told the nurse again today about it and she is going to tell the dr and see if she wants to do anything about it. I am guessing I won't hear back. She pegged me as over protective from the beginning and poo pooed me. I am so irritated by all of this.

So reason for my post, should I bring this up to anyone above her and if so who? We have a second option but can't get in till Dec 22. Thanks so much

[APToddlerMama]

I'm sorry mama.  That sucks.  I have no experience with seizures although we did have do to the EEG and MRI with DS to rule them out.  I would request her medical records so you can see them for yourself.  Are there other places you can call other than the December apt?  Or maybe you could call and talk to the nurse at the new place and fax the records over so they can look at them and tell you if she maybe should be seen sooner?  Sometimes when you talk to the right people, they can make space for you.  I've gotten appointments moved up quite a bit just by asking to talk to the nurse instead of receptionist and basically begging.  Also you should ask them to call if anyone cancels and they can get you in sooner.

As far as dealing with the doctor who has been so terrible, I personally would not waste my time at the moment.  I've gone that route and gotten nowhere other than really frustrated and ticked off.  After everything is said and done, you could always write a letter outlining your concerns, what happened with the second opinion, etc.  Good luck. 

[ASusan]

We've had specialist appointments moved up as "emergencies."  DS's family doctor (who refers us originally)'s office has to call the specialist's office and tell them it is more urgent (than Dec 22). We've had this done twice, for totally different reasons/specialists.

My other thought - and maybe I didn't follow your story closely enough - is that the dr gave a reason for the MRI (abnormal EEG?) for insurance purposes. MRIs are super expensive, and the insurance might not cover it if there isn't a "reason." So maybe the EEG is in the normal range?

Best wishes to you. I cannot imagine the anxiety you must be feeling. Brains are fragile things, and it's scary when things go wrong with them.

[Katie T]

Originally Posted by ASusan 

We've had specialist appointments moved up as "emergencies."  DS's family doctor (who refers us originally)'s office has to call the specialist's office and tell them it is more urgent (than Dec 22). We've had this done twice, for totally different reasons/specialists.

My other thought - and maybe I didn't follow your story closely enough - is that the dr gave a reason for the MRI (abnormal EEG?) for insurance purposes. MRIs are super expensive, and the insurance might not cover it if there isn't a "reason." So maybe the EEG is in the normal range?

Best wishes to you. I cannot imagine the anxiety you must be feeling. Brains are fragile things, and it's scary when things go wrong with them.

I was hoping that was the reason but a first non febrile seizure is enough for insurance to cover it and the nurse read the EEG results to me on the phone today. She had abnormal results. The slowing alone is not a huge worry but the possible seizure activity is and the fact that she told me it was normal when in fact it was not just irritates me. Esp since the morning after when she reported that it was normal and that she new it was but did it to "humor" me. I would not take my family pet to her after all this!

[caetlinh]

Oh Mama, I'm so sorry, having a sick child is horrible!  Although I have no experience with seizures, my daughter had GERD so bad at 4 weeks, that she was spitting up blood!  For the next 6 months I ran the gamut with the ped's as well, and I also suffer from a rare thyroid disorder so I totally understand the rigmarole with Doctor's. Don't ever go back to your ped again. Honestly, YOU trust your instinct! If you think something is wrong with your child, back down for nothing and nobody!  I would start doing some research on her condition, insist on copies of ALL of her records, and start calling specialists.  Get on the lists of 3 or 4 people because it takes so long to get in, and call everyday to see if there's been a cancellation.  Then go to medhelp.com it's an incredible website with very knowledgeable people and post your information in the seizure forum -they can help you!  Good luck and stick to your guns!!!!

[captain optimism]

If the first pediatric neurologist operates out of a hospital, rather than in her own office, you can call the hospital ombudsperson or patient advocate to ask what recourse you have if a doctor doesn't report your child's test scores accurately the first time. That's not someone above her, but it's someone who is there to be on your side and tell you what you need to know. 

I do not know on what planet a doctor has to live to think that a mother concerned when a three-year-old has a seizure is "overprotective." It's a seizure. That doesn't happen to all three-year-olds. There were continuing spasms afterward. That doesn't happen to all three-year-olds. I suspect this is the utterly unprofessional rhetorical defense of a psychologically immature person who can't bear to admit that she doesn't know why your child is having the seizures. I also suspect that reporting the wrong results is something that could result in loss of hospital privileges and disciplinary action by her state board if she does it enough times. (Once she could probably write off as a mistake.) 

[Virginia Mom]

Hi Mommie. I can't even begin to tell you about the hell we went thru with my ds.So I feel your frustrations.  First and most importantly, DEMAND YOUR FREE COPY OF ALL TESTS.  If the test, or procedure was done at a hospital, they can give that to you as well.  We learned first hand how often doctors make mistakes and misread.  My son has a very rare DVA in his brain......it's more like two large clusters of road construction .......never seen before by the best specialists at Johns Hopkins. All of his EEGs came back normal.......His first 4 CT and MRIs (mra, mrv, etc) were normal---rather we were told to come back in ten years for a follow up.  My instinct told me to research the best vascular brain specialist and they did 3? more scans, including a cerebral angiogram.........It took one year, 6 scans, and changing doctors --two different states, and a room of over 20 consulting nueorologists to agree......(it turned out that the very first scan that was done, the initial summary of findings had a note that a cerebral angiogram was suggested--but somehow between the intital findings and the final summary, it was left out----so mistakes happen...just be on top of it....OH, sorry, my point, get a second opionion and your test results. You can file a complaint, but as I did, the doctor lied and he was never reprimanded .....PM me if you want to talk more.

[Katie T]

I do worry about her just lying. I just want to know what is going on with my child. She is still not back to her normal. Even reading the progress notes from her hospital stay you can tell the Dr looks at me like I am a fool. Well I am sure after today she is not happy with me. I called once again (You are asked at each appt. if you want copies I always say yes and I have filled out the paper work in med. records) and asked about getting the EEG video and results. I was told that they don't give you the video. Umm better find out if someone works in health care before lying. So I gave up trying to get my point across to the Dr.s nurse and called med records. He is sending me out the results and the video. I have a call into our family DR who was suppose to receive the results to see if he did in fact receive them. 

Thanks everyone for your input. So stressful on top of all the other stress. 

[K1329]

I wouldn't waste my time with complaining to her supervisor. Even if you adore her, it simply makes sense to get multiple opinions. And, if you don't work well/"click" with her, time to move on.
I've seen 5 doctors for the same medical issue. I've gotten 3 different diagnosis' with 4 different treatment plans.
I also agree with the pp that speculated that she wrote that for insurance purposes. Most expensive tests require an unbelievable level of justification by insurance companies.
Good luck, I hope you get some answers soon!

[Katie T]

After talking with the nurse it was not written for insurance reasons she had abnormal results. Do any of you get flack from your insurance company for getting so many opinions? That is a concern of mine.