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Baby with seizures

Sun, 01/07/2007 - 22:08
HI!! I AM NEW TO THIS SITE, AND WAS TOLD ABOUT IT FROM A WONDERFUL FAMILY AT CHILDREN'S HOSPITAL WHERE WE MET. WELL MY STORY: MY HEALTHY NIECE(3 WEEKS OLD AT THE TIME) 2 WEEKS AGO WENT TO THE HOSPITAL FOR A LOW FEVER. THE HOSPITAL NEVER TOOK HER TEMPERATURE AND TREATED HER AS IF SHE HAD AN INFECTION IN HER BLOOD. THE NURSE THAT GAVE HER THE ANTIBIOTICS WAS A NURSE IN TRAINING AND GAVE MY NIECE A HUNG BAG WHICH CAUSED AN EMBILISN(SP)(AIR BUBBLE THAT GOES RIGHT TO THE HEART). AN INFANT HAS TO HAVE HUNG BANGS PUMPED, WHICH THE NURSE DIDN'T DO. MY NIECE CODED BLUE AND HER HEART STOPPED FOR 30 MINUTES, THE DOCTOR NEVER GAVE UP, AND BROUGHT HER BACK, WHEN SHE WAS BROUGHT BACK, A HELICOPTER CAME AND FLEW HER TO CHOP IN PHILADELPHIA. WE BASICALLY ONLY HAD GOD TO SAVE HER, THEY DID A NEW METHOD CALLED COOLING OR FREEZING THE BODY AND BRAIN, SHE MADE IT!! EVERY DAY WAS A WAITING GAME, BUT EVERYDAY WAS A MIRACLE AND SHE AMAZED US. SHE HAS OVERCOME MANY OBSTACLES,HER BRAIN WAS ABNORMAL, AND JUST THE OTHER DAY HER EEG CAME BACK NORMAL, HER BRAIN REGENERATED ITSELF. SHE IS SWALLOWING AND BREATHING. HER HEART IS FANTASTIC, AND SHE JUST CAME HOME. SHE DOES HOWEVER HAVE BRAIN STEM DAMAGE, BUT WE DO NOT KNOW THE EXTENT. SHE DOES HAVE SEIZURES, BUT HAS BEEN ON PHENEBABORTAL(SP) TO STOP THEM, WE WON'T KNOW FOR 2 MONTHS IF THEY WILL EVER STOP. THIS BABY IS TRULY A MIRACLE, AND WE MUST OF HAD THOUSANDS OF PEOPLE PRAYING FOR HER IN EVERY LANGUAGE, THE POWER OF PRAYER IS AMAZING. I WOULD LIKE TO KNOW IF ANY OTHERS HAVE HAD A CASE LIKE THIS,AND HAVE THEIR CHILDREN LED NORMAL LIVES OR HAVE COMEOUT OF THIS WITHOUT A DAMAGE? THANK YOU KINDLY, TIFFANY

Comments

Re: Baby with seizures

Submitted by txrhb1 on Mon, 2007-01-08 - 00:22
Dear Tiffany, What an inspiring story, and thank you so much for sharing it with us. I am so happy to hear that your darling niece has done so well. What miracles we see in this world. And yes, the power of prayer is absolutely amazing. I don't have any experience with infant seizures, but both my daughter and I have seizures. My daughter has had them since age 9, and is now 23, a mother of a beautiful 10 month old baby girl, and is living a wonderful life. I have had seizures for years, undiagnosed for a long time. I have led a wonderful life, had a very fulfilling career, have 7 children and 11 grandchildren. So yes, you can overcome and lead a very happy productive life. It is not always easy, but then again, who in this world does have it easy? I wish you and your family the best of luck with your little angel. Please keep us posted on how she is doing !! ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: Baby with seizures

Submitted by steg2307 on Mon, 2007-01-08 - 20:16
Thank you so much, your response gave me hope to our little niece.I will keep you posted. Thanks again for your inspiration

Re: Re: Re: Baby with seizures

Submitted by krissy parra on Tue, 2007-02-13 - 13:17
hi, my baby started out with "episodes" when she was 4 weeks old she would run a low grade fever and just kind of stare off and this would last up to 12 hours we took her to the er several times(about ever two weeks) and they always dismissed it as some kind of virus or infection, finally at five months old when I took her in they realized something was really wrong she was having complex partial seizures and was in a state of status epilepticus her ct scan was normal as was her eeg but about a month later they did an mri that showed a brain tumor in her 4th ventricle they removed most of it but it had grown into her brainstem so they had to leave that portion. she was seizure free for 2 months post surgery but about 3 weeks ago they started again we just started her an keppra last week and shes been on topamax,but thru this all she is meeting all her milestones shes 10 months old now and crawling all over the place trying to pull up. good luck to your neice I hope she does well.

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