Madilyn

[samantharusch]

My daughter is 22 months and has been having episodes where she gags and coughs, she also foams a bit from the mouth, her eyes roll back in her head and she has turned blue a couple times.  She has Down Syndrome and has had a Nissenfundoplication which can explain the gaging and coughing but no one can tell me why she is demonstrating these other symptoms.  I even got a couple episodes on tape so the doctors could see it and they still have no clue why she does it.  Last week she had an EEG which showed that the back right part of her brain is slower than the rest.  The doctors told me they don't know what it means, do you?

[vickilynnpurdy]

Your daughter is beautiful. You are her only advocate....You know that there is something wrong! You~ Do not wait until the Dr has the time. Take her now to a different pediatric neurologist, who will care enough to find an answer when he doesn't have one!!!.....YOU WILL BE GLAD THAT YOU DID!!!.......I waited because a Dr told me that I didnt have to worry and that all I needed to do was chart the seizures and bring in the chart with me for his appointment previously set for April 28. This was months prior to that date. ....Bye April 28 this sweet 21 month old had brain damage.........I WISH THAT I HAD NOT LISTENED!!!!!  I WISH I HAD FOLLOWED MY HEAD AND MY HEART!!!!!  

[DIANA_RIVERA]

IT MAKES ME UPSET THAT WHEN A DOCTOR OR SPECIALIST OBSERVES A PATIENT AND HAS CERTAIN TEST DONE AND IN THE END STILL HAS NO IDEA OF WHAT IS GOING ON AND YET THE DOCTORS THEMSELVES ARE NOT PUSHING TO HAVE OTHER TESTS DONE AND OTHER SPECIALIST INVOLVED..   WHY SHOULD THE PATIENT OR PARENTS OF THE PATIENT HAVE TO DO SOO MUCH PUSHING TO GET THINGS DONE?  ITS BAD ENOUGH WHEN  A THEY HAVE NO CLUE WHATS IS HAPPENING WITH  PATIENT AND MAKES IT WORSE BY NOT INSISTING ANY OTHER TESTS OR INSISTING THAT THAT OTHER SPECIALIST GET INVOLVED..  UR DAUGHTER IS PRECIOUS GOD BLESS HER. IM GOING THROUGH A TOUGH TIME WITH MY 2 YR OLD SON ALSO FEELING THAT THE DOCTORS DONT SEEM TO FEEL THAT THIS STUFF IS AS IMPORTANT AS WE THE PARENTS THINK IT IS..  8 MONTHS OUT? THAT IS TOTALLY REDICULOUS!!!!!!  I HATE WHEN THEY DO THAT. KEEP CALLING TO SEE IF THERE IS A CANCELLATION IN SOMEONES APPT. TRY TO MAKE THE APPT SOONER.

[supermomma531]

Your daughter is so cute! What a darling! Anyhow, I am strongly suggesting that you push to have a mri done and like the other member said, a more detailed eeg to be done. If she is having seizures,these aren't to be played with.My 7 yr old boy has been having seizures since he was two and still continues to have uncontrolled epilepsy. He has gotten to the point of being through every med known possible for a child and is now being considered for surgery.He takes 3 different types of seizures and is on 4 medications just for seizure control right now. But these episodes that you're describing sound exactly like seizures.I'm not trying to scare you but whatever is happening to your girl can be very serious. And these doctors need to be serious about the whole situation. I hope that you can get the help that you need. I know that what you are seeing right now is very scary. I feel scared everyday for my boy, not knowing if he'll ever become seizure free. It's very unlikely for him because of his situation.Please let us know how you do in getting the right help. Good luck.

[cngluvsanimals]

Have you suggested an MRI or scheduling a more detailed digital EEG?