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Normal blood tests, now what?

Sat, 04/07/2007 - 01:16
So Kaitlyn (who will be two in May) had a bunch of blood work done (I'm not sure what they were all testing for, but I'm sure most of you have had your little ones have the same blood tests) all came back normal. But I am now having my mind running with a million other what ifs. I just want a diagnosis so I know what this is that is causing her to have seizures. She gets her MRI next week... and her EEG was last week and that came back normal. How many of you guys have had your kids have normal blood work but then when they do the MRI have it come back with something? How many have still to find out what is causing them?

Comments

Re: Normal blood tests, now what?

Submitted by ekoorb on Sat, 2007-04-07 - 09:22
My 6 year old daugther was diagnosed with Benign Occipital Childhood Epilepsy (BOCE) around 14 months ago. Diagnosising a child with E seems to be a process (EEGs, MRIs, parent observations etc.). My daughter did not have bloodwork done as part of the process but I believe that the bloodwork is just one more piece of information for the docs when trying to determine whether your daugther has E or whether something else is causing her symptoms. I know waiting for the MRI is really tough because of all your fears of the result and fears of the test itself but the MRI will put you one step closer to a definite diagnosis and will rule out any structural abnormalities in the brain. While some children may have some abnormality, many others diagnosised with E have completely normal MRIs and there is no visible physical explanation for the seizures. Because my daugther was only 5 when she had the test, they did not have to use the regular anethesia (sp?) that they would use with an older child. That gave me some comfort. Rather, we had to keep her up really late and we scheduled the test really early in the morning and with the med they gave her, she fell right asleep for the test. I know how stressful this process is. You just have to take this one step at a time. I definitely recommend going to an E specialist. We started with a horrible neurologist (cold and mean bedside) who just wanted to call my daugther's condition epilepsy with no further explanation. When we went to the specialist, he changed our lives. Our first meeting, he talked with us for an hour and a half (my mom took our daughter home after the 10 minute exam) and I cried in the meeting because I finally had a caring doc who took the time to answer our questions. It was not until this doc and a 24 hour EEG that we got a specific diagnosis of BOCE. Then I was able to take this diagnosis and read and learn and put a handle on what was happening. I know you are probably scared and stressed out but you are doing all the right things and your daugther is lucky to have such a dedicated conscientious mom. Please write back and let me know how the test goes.

Re: Re: Normal blood tests, now what?

Submitted by kaitlynsmom on Tue, 2007-04-10 - 13:51
It's horrible waiting. It seems like I am waiting for everything. I am waiting for the results from everything, and waiting for the next procedure, waiting for her to have another seizure. Just waiting. I am not sure what they will use to put her to sleep, I hope they give her something to drink instead of an IV, the IV's are horrible. I hate to see her with them. Are there E specialist's that work with kids? I am having a hard time finding one that seems kids her age. Everyone that I can find that is on this website is only for adults. And if you just call neurology, can you ask if they are specialize with E? I just want a real diagnosis, I want to know exactly what kind of E she has, and how to handle it, what our options are, everything. I just want some more information. Well thanks for writing me! This website is helping!

Re: Re: Re: Normal blood tests, now what?

Submitted by ekoorb on Tue, 2007-04-10 - 23:03
Yes, there are E specialists for kids. Our daugther's E specialist is amazing. You definitely should try to find one. If I were you, I would post a topic asking if anyone knows of E specialists in your area. You might find this info. already existing in the search engine to your left. It may take months to get the appointment but it is well worth the wait. Are you in a big city near a children's hospital? Go on line and look up Children's Memorial Hospital in Chicago, Illinois. In their web site, you will see a department that focuses only on Epilepsy with children. Hopefully there is a similar hospital/department near you and this web site and give you some direction in conducting an internet search to find a doc. I am sorry the waiting is so stressful but you are doing all you can do for now. Stay strong.

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