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kaitly...
kaitly...

Finally feeling in control of it all... for now!

So we took Kaitlyn to a new neurologist on Friday the 6th, and he was goofy looking and different but a great doctor. I really liked him. He was very reassuring and really seemed to know what he was talking about. During the time that we were there, we saw other children around Kaitlyn's age that were there for seizures. It was sad to see the children but at the same time reassuring that we actually saw other patients there that were there for the same reason. The doctor wore a leisure suit and sat in the patient chair and just chatted. Right when he came into the room he was friendly and talked to us. He wouldn't call her seizures, seizures... instead he called them events/episodes. He said until he can catch them he doesn't want to call them seizures. He did however give me the name of a book to get, he is the FIRST doctor ever to give me a name of a book... I already knew I should get it though. It's the book that everyone on here has been recommending. Seizures and Epilepsy in Children, A Guide. It was kind of nice to have him tell me to read it to get more informaiton. The other doctors told me numerous times don't believe everything you read and don't read everything you see. He seemed impressed by the fact that I have been reading and looking for more information. He was great with Kaitlyn. Kaitlyn really liked him, that is the first doctor that she has seen that she liked. He just sat back and watched her play and talked to us. He made sure that he got all of the information and it was just an overall great experience, not to mention he is only 35 minutes away from us and close to my favorite mall so we got to go shopping for the kids before the appointment :-D .

He said that he doesn't want to start her on any medicine again just yet because we have been through two bad experiences already and he said that he would change his mind if she has more "events". We get to go and do a 24 hr EEG next week. That was fast. Normally it's months out. But he's wanting us to get answers and since we haven't had one done yet, he said he wants it now. Another positive of him. Oh yeah, and he is the DIRECTOR of the Epilepsy Care Center at this hospital. I have never dealt with the hospital, and it's not a childrens hospital but I am hoping for the best. We will take a bunch of her favorite stuff of course in case they don't have any there but I bet they do. It's a new hospital so I'm sure it will be nice. I asked the doctor about whether or not there was any blood work that he could do to see if he could pinpoint a cause, he said that he wants to do a whole bunch of blood work when she is in the hospital but not before because they can put this numbing cream all over the area and then do the blood work so it doesn't hurt her. I liked that too. The more I think about the appointment the happier I am. He was just a great doctor. We were kind of leary at first because it wasn't based in a hospital, it wasn't very professional looking but he was the best doctor that we have seen. I think I am going to ask for a referral to a pediatrician that deals with kids that have Epilepsy so that way we have a good ped too. He did say that he doesn't think that it's benign (not sure what that means) because she looks fine and is developing fine. But I don't know for sure what that means.... I think I need to get that book now.

That's all... it was great! Oh and Kaitlyn being off of the medicine has been wonderful! She has been great. I can't even describe how wonderful she has been. She has been happy and helpful. She has been cuddling with her brother and loving him like a good big sister. She has been so easy to handle. I don't want to have to start medicine just yet. As I am writing this, she is giving her dad a hug and is being so nice and cuddly. When she was on the medicine, there was no hugging from her. She's got such a great sense of humor and is such a nice and caring little girl, but when she's on the medicine she becomes another person.

By kaitly... at Sat, 07/07/2007 - 10:17am | 138 views | 5 comments
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Oh Emily, I am so happy to read this blog...
I really am so happy for you I could just cry! I am so happy that you have your sweet, loving, funny lil' Kaitlyn back! Your new doc sounds great too!

Best wishes and lots of hugs,
d

I'm Molly's Mom and Proud of It!

NoEsFacil

Thank you so much D, you have helped me alot throughout it all. I am getting anxious for tomorrow... I sure hope that it all goes well. Nic is going to stay with Kaitlyn over night so I'm going to miss her like crazy and then not knowing everything that is going on there while I am not there... I hope that she doesn't get to upset with it all. I think she might have fun though, we are going to stop by the store and pick her up her own doctor kit to play with while we are there too..

kaitly...

It is nice to read about others dealing with the same type of issues. My daughter, age 1, was just diagnosed a little over a month ago and I am trying my best to deal with it and not to get too upset. Actually there is no time to get upset......I am too busy making appointments for tests and neurologist visits. My daughter, Elena, has been experiencing simple partial seisures and has them 4-5 times a day. Currently she is taking Phenobarbital and was recently put on Topamax however, the meds are not working. Therefore, tomorrow we plan on taking her off the Topamax and upping the dose of Phenobarbitaol. Do you have any experience with these drugs? My daughter too acts like a different child since she has been on the meds. I hope someday she will grow out of this. I feel helpless that I can do anything for her. Well, we have an appointment with Children's Memorial Hospital in Chicago in a couple of weeks, I hope we find some answers then. Thanks for sharing and am eager to get the book. I hope everything went well yesterday with your daughter's EEG. My daughter had an EEG but, it was only for about 1 hour. The EEG came back abnormal however, the CATSCAN and MRI were fine. What medications was she on? Have a nice afternoon! Elenamom

elenamom

Its great that you found a good neruo.I have been fortunit to have good neruos for my daughter.Not always good peds though. For me that seems to be hardier to find. My daughter was two when she started having seizures.(she is six now) All of her tests have always come out normal.This us to be very fustrating for me. How could she have seizures and still have so many normal test? Then it was finally explained that she could have seizures and still have a normal test. If she wasnt having seizure activity at the time the test wouldnt show anything.The other good side is that we no someday she will outgrow this.We had great sucess with trileptal for four years.She would be moody and tired for the first couple of weeks when we would raise it but that was all.Then she would go back to her happy self and enjoy being a very active toddler.The biggest problem with trileptal is that it can lower the sodium in your blood.The easy fix for that is gatorade.Good luck with her test.I hope it comes out well for you.

littlebug

Thank you very much! I am hoping that it all comes back good but at the same time we want some answers. The doctor we saw seemed to be pretty positive that he could help us in some way or another. Which is nice. We haven't had good luck ped's either. I hate to switch alot but at the same time I hate to stay with one that I feel like I can't even talk to without her being judgemental about the choices that we are making. I don't know, it's hard. I am hoping that the neuro can give us a good recommendation. It seems like there should be peds that deal with children that have special considerations vs the normal healthy child that doesn't really have any health issues.

kaitly...