So this week has been extremely frustrating. On Monday I got the test results from my pediatrician that the EEG was abnormal. So what does that mean? She didn't know. So I called frantic to primarys to talk to our neurologist, they said he can get back to you in 24 hours. Luckily I have my dad. He interpreted the results and said it's abnormal because Lila may have a tendency to have seizures. That was the reason they gave insurance to justify the test. He also said not to worry to much about it. My brother also tried to warn me (they are both amazing physicians) that an abnormal reading may not mean anything, kids brains are changing all the time, in fact it's pretty easy to get an abnormal reading when they are this young and when nothing is wrong. So I was feeling uncomfortable that it was abnormal but not panicked.
Then came Tuesday, a nurse from our neurologist called. She said that there are three reasons to have an abnormal reading, 1-you are having a seizure 2- you have the tendency to have seizures and 3- you have a sick brain and there is nothing we can do. She explained that Lila has abnormally slow brain wave once in a while when she sleeps. I asked which category does that fall into? She answered the sick brain category. Sobbing, I asked what else we could do? Where there other tests to see if my baby has a sick brain? She said nothing comes to mind, but I'll have the doctor call you.
Now I was hysterical. All the good info my dad and brother gave me went out the window. I know that's horrible but it's a little hard when someone says your kid has a sick brain and there is nothing we can do. So I started calling primarys everyday, asking to talk to the doctor. I also started to call genetics everyday to make sure that we are testing for what the doctor wanted us to (that's a whole other story, no one can tell me that the right tests have gone out for that syndrome either) No one has called back!!!! It's been a week! I haven't gotten anything. I call everyday and no response. Not one person has even acknowledged my existence. In the meantime I have researched slow brain waves while sleeping, it could just mean epilepsy. We can handle epilepsy. That doesn't mean sick brain, nothing we can do. I'm not just frustrated at this point, I'm mad!
What can I do? Any advice from mom's who have had to do the primary testing drama? I feel so helpless.
7 comments:
That is so frustrating. I wish I had practical advice! I just wanted to tell you that you are doing the exact right thing- you are advocating for Lila, calling, pushing for more tests, better answers, etc. I'm sure you feel helpless but you are a warrior mom!
I'm so sorry. The treatment you are getting is ridiculous!! Doctors can be so frusturating, it's as if they don't realize that the average person doesn't deal with this every day, nor can the average person understand what the results mean. I'm furious for you!! But I agree with the previous comment, keep pushing! Call several times a day! It's your right and no one can blame you. Stalk the hell out of them!!!! ((((HUGS))))
Paul Wirkus 7478700 please call
I would say keep doing what you are doing Kris. My mom said my brother James (who is totally fine) had lots of EEG test when he was little and they came back abnormal for seizures. She said it lasted a while and it was scary, they were also concerned that he may have epilepsy and you've met James, he's totally fine! If you are frustrated and need to vent I will always having a listening ear. Hang in there!!
Dear Kristi,
I am the Mom of a boy who was born with Agenesis of the Corpus Callosum. He was diagnosed with ACC when he was four months old. I have been following your blog for awhile and have wanted to send you a note but it wasn't until tonight that I felt led to get in touch with you.
Receiving the diagnosis of ACC for your baby is shocking! On top of that then you also have to deal with and come to terms with the fact that there is no way to predict how of if ACC may affect your baby. It becomes a "wait and see" period and it is only with time that your delightful little baby begins to reveal to you their abilities. I can relate to so many of your feelings, your concerns and the overwhelming emotions that try to consume you at times when you are the Mom of a child with ACC.
Like you, my son also had an EEG (several of them actually), was tested for a specific genetic syndrome that they felt he had and I had to endure the waiting period of a very long 6 weeks wait for results...that turned out negative. He went through many tests and also received a lot of therapies from Early Intervention and at the Children's Development Rehab Clinic. For me, the first year or so was the most difficult. I cried a lot of tears but it does get better.
I would like to share the things that I have learned about ACC with you sometime if you would like to know.
E-mail: hope@aracnet.com
If you may feel comfortable sharing your thoughts or anything that may be on your mind...I would be very happy to listen and am here for you.
Lila is absolutely adorable and she will amaze and surprise you many times with all of the things that she will do. ♥
Sandie
Kristi....hang in there. How I hope you've gotten answers by now. Please call if you ever just need to bawl to someone.
My sister, liz kerr bell, gave me the link to your blog today (ironically as we sit here inpatient) and have felt compelled to let you know that I can understand your fears, frustration and never ending anxiety. Our youngest is still undiagnosed for the most part but as time goes on, that constant gray cloud does let up some. You are in my thoughts and prayers. If you ever want to communicate or vent about all the medical hoops we as moms have to jump, email or leave a note on my blog.
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