update on my son

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lahacade

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On tuesday at 8am my son was admitted to the hospital and wired up for a VEEG. We were there until thursday at 1pm. 53 hours. The doctor and resident said to go home, the nurses felt that we should have stayed. (My son is 5 1/2 months old.)
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There entire time that he was there his brain waves were completely normal. But he never had one of his 'episodes' (as the doctors are calling them). We got home from the hospital at 3:05pm and less than two hours later, just before 5pm, he had one.
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Anyway, the doctors are saying that they don't no whether or not his episodes are truely seizures, because 98% of people with seizures have abnormal brain activity even when they are not having a seizure. And that his episodes are probably harmless. But to be honest I really did not like this doctor. On tuesday, when we met him for the first time, he asked me what my son's pediatrician had said. I told him that the pediatrician didn't say anything other than that the 'episodes' sounded like seizures and that we needed to see a neurologist. And that the neurologist would probably do tests like EEGs, CT scans, MRIs, bloodwork... Then the doctor freaked out at me! He started saying things like how he was glad that the pediatrician was telling him how to do his job. The neurologist was literally yelling at me about it and I had never even said anything bad... I don't know it was just really weird.
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Anyway he goes back in august for a check-up. They are saying that as long as my son continues to develop within normal limits they will probably not bother him with any other tests.
 
Hi there!

Sorry about your little guys spells. I will give you my best advice that I have learned through my own experiences. Always go with your gut feeling. Especially since you are a Mom. You can't go wrong. Your instincts are right the majority of times. If you had a bad feeling about the Dr..(I don't care if he is supposedly the best Dr.) go to a Dr. that will listen and that you can ask questions and feel comfortable with. Someone that will work with you to help figure out what is going on. Especially since he is 5 1/2 months old I think you said. I went from Dr. to Dr. and I was completely misdiagnosed initially as having "anxiety" the typical Mom label when they say we are overstressed etc. I knew it was not the case. After yrs..I finally had a Dr. listen to me...and refer me to the right Drs. and had a correct Dx. I hope he is doing well and you get things figured out. Maybe it will be nothing. But at least you will know for sure. Best wishes for your little man!! : )) Keep us posted!

Michelle : )
Michelle
 
If you can, I would get a 2nd opinion. It doesn't sound like this Dr helped much.
 
I agree, get a 2nd opinion

My EEG's were always normal unless I was in the middle of a seizure. The Neurologist told me that after having epilepsy for over 40 years that I'd been imagining it all because of that.

The next neurologist sent me for a VEEG & a ton of tests. It was the MRI that found the lesion on my brain causing the seizures.

Definitely talk to someone else but I've been told that such things like lesions can be harder to find in infants than in fully grown adults. (Of course that also might just be an excuse for them not having found my lesion until I was much older)

Good luck & like Georgia Girl said don't give up on your gut feelings.
 
lahacade said:
... The neurologist was literally yelling at me about it ...
Click to expand...

That is very strange. Sounds like the doc has issues.

It's unfortunate that your son didn't have an episode/seizure while the testing was happening, but that is actually pretty common. A lot of people fail to seize when put in that environment (when everyone is waiting and expecting it).

As others have said, trust your instincts and keep seeking an answer. :twocents:
 
Like Bernard said, the neuro sounds like he has issues to treat you like he did. His job is to listen, not BARK!!
Your the mother, and as mothers we have that instinct to know when something isn't just right. And your little one has the right to be taken care of, so please seek out a 2nd opinion and find someone who WILL listen and who you feel comfortable with.

Cindy
 
Rebecca did not have a seizure when hooked up for her VEEG. She has not had seizures during her other EEGs either. However, her first EEG showed abnormal activity. I was told that the brain can become stable again. I was also told by another doctor that perhaps the first doctor didn't know how to read the information.

I would base your course of action on instincts and as good as some of these tests are they are not perfect indicators of health. You know something is happening, consider there is a reason for this and start eliminating and changing his environment. It will take time, but you will see patterns begin to emerge and you might be the lucky one that is come faster than most since he is so young. Truly go with your gut, and if something as simple as {for example} - eliminating dairy products changes the situation, then you are on your road to health. There are many reasons for a child that young to have seizures, you don't need a "doctor" to help you find it.
 
You need to see the Patient Advocate at that hospital. You were treated very shabbily and that "doctor" was very unprofessional.

Patients have rights and yours were clearly stepped on.

Please seek another doctor. Call your HMO explain how awful you were treated and get a list of their other doctors.
 
I'm a strong Advocate of 2nd Opinions, and I
recommend strongly to go seek for one; if your
intuitions is telling you otherwise, and the fact
that the hospital staff indicated in your post was
one clue right there that they wanted him to stay.
I'd have a serious talk with your Pediatrician for a
2nd opinion and I wouldn't delay it, because it's a
known fact that the younger they are the better
the outcome is for babies and little ones with Epilepsy.
So go for it and push for the appointment with the
Pediatrician - and push for the 2nd opinion; and if
all possible - go for the Level 3/4 Epilepsy Center if
there's one near you or Cleveland Clinic.

You can find one near you at: Cleveland Clinic
By clicking on Neurology and the locations

And another option is the Epilepsy Foundation's
FIND A DOCTOR

I hope this all is of benefit for you!

Also Epilepsy Foundation's Communities has a
Parents Helping Parents aka PHP Forum - where
you will find lots of parents there assisting others
and you'll find yourself in the same scenerio and
in the same boat as many others who've been
through it all. We have one member who comes
in here sporadically who posts in PHP frequently,
Ginny - she's a blessing - Kayakmom, who is with
the Epilepsy Foundation and frequents the PHP
forum side and is of great benefit to many parents
with child(ren) with epilepsy(ies).

Clicking on the Epilepsy Banner below will also
take you to the Epilepsy Foundation as well.
 
It took us 7 video EEGs (total of 6 years after my son's misdiagnosis took his diagnosis away) to get the diagnosis back...3 of those years he was off medication!! We fought very hard to get medications back when we went to a new doctor! He had been off meds 20 months, was loosing skills and it still took 1.5 years.

His eeg is basically normal and we have not caught seizures during his multiple VEEG,s but did have them finally see enough abnormal spiking, even though not a LOT to get his epilepsy Diagnosis back. My son have been having seizures for 10 years.

Get a second opinion!

You were not treated in a professional manner!! It is NOT true that 98% have abnormal brain waves! ACtually 40% can have a normal interictal (in between seizures!!)

Best wishes

Ginny
 
I'm sorry to hear about your little guy's spells. I hope you get everything figured out. As everyone else has said, get a second opinion and follow your gut instinct. I went through 5 doctors before I found one who was willing to listen and explain things to me. I have had several EEGs and have only had abnormal readings on one of them (sleep deprivation and hyperventilation--not something you can get an infant to do).
Best wishes,
Morgan
 
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