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New to this...9 year old daughter

Sat, 05/12/2007 - 01:34
Hi there, I am desparate to talk to anyone in a similar circumstance. Our daughter is quite dramatic, and I have not, I guess, taken things as seriously as I should. But, I didn't know we were dealing w/seizure issues! She's been moody and spacy for years. Thought it was hormones. At night and at homework time, she "has a headache, is hot, is dehydrated" etc. Againk, I thought, Drama Queen!!! Well, the poor girl... Tuesday morning I heard a clunk and went running up to her room to see what looked like my daughter being electrocuted. I'm sure you know...it was the most horrifying thing ever. She stopped after a minute, but was out of it for a while. Had a cat scan...nothing. EEG this morning, and I'm thinking it recorded some activity. She said she felt the "tingles" with the strobe light and the "heavy breathing" part. She was scared, felt like she was going to die, felt like she was "sucked up in a tube and we were far away." I feel soooo terrible and sick about this. We honestly just had her evaluated for depression, something I (mom) deal with too. Were wondering about ADD, etc. I knew something wasn't right, but really figured it was due to drama, hormones, etc. I had no idea. But now we do. 2 months ago she probably had one at a friend's house, but they didn't see the jerking. ONly saw the aftermath where she walked into 2 walls and was out of it. After 10-15 minutes on the couch, they said she snapped out of it and was normal. We figured she was sleepwalking, and obviously hadn't slept enough and was in a new house! Anyway, I feel horrible and specifically would love to talk to a mom of a 9-13 ish year girl. Did you ever misdiagnose your daughter...well, until you saw that grand mal! I cannot believe this and feel terrible for her. Even this afternoon I saw her sitting on the couch staring, which I always attributed to boredom...she started in on what I've always thought was 'drama'..."I don't feel good...I'm hot, I have a headache" etc. I asked more probing questions, I guess, and she said "I feel the tinglies in my feet right now". My gosh...could she have been having a seizure as we were talking? She sat there for probably a half hour, then suddenly felt better and started dancing. She told me that dancing helps her feel better. We often have to have her stop dancing to do homework or go to bed and that makes her so agitated. Please email or reply here...I'd be happy/thrilled/ecstatic to call you if you didn't mind. I don't know how many years of frustration are bottled up here...and to think she may have been having seizures. I'm sick about it, but also relieved to think there might be a reason and it could be treatable. Thank you!

Comments

I really have to agree on

Submitted by happycat2 on Tue, 2007-05-15 - 02:57
I really have to agree on this .... This is a process, and part of the journey in getting answers that you need that will help. The right doc, right meds help, as does just trying to understand and go figure. That includes trying to get inside the mind if a child, and seing things their way.... I can see also as a parent were the worry steps in and you wonder what is 'best' for your child. Me? I look at things this way.… Sure, doctors and neuros don't know everything (I'm not one or know everything either.) What I do know is this.... Testing methods have improved (or so I have read. ) In the area of hormones for sure, has been for awhile now, at least to my knowledge it is an area being more researched. There sure is need in the world for why, and for good quality factual research. The medical community is more aware now why the need for further testing when EEG's can be clear? For an example... See below... One of the most difficult aspects of living with epilepsy is the uncertainty of when a seizure is going to occur. Surveys and studies report a high level of anxiety about seizures among people of all ages, even when it has been some time since any seizure activity has taken place. http://www.epilepsyfoundation.org/epilepsyusa/predict.cfm Considerations There are a wide variety of possible symptoms of seizures, depending on what parts of the brain are affected. Many types of seizures cause loss of consciousness with twitching or shaking of the body. However, some seizures consist of staring spells that can easily go unnoticed. Occasionally, seizures can cause temporary abnormal sensations or visual disturbances. http://www.umm.edu/ency/article/000021.htm http://www.nlm.nih.gov/medlineplus/ency/article/003200.htm http://www.emedicine.com/neuro/topic342.htm http://professionals.epilepsy.com/page/women_guide.html Hang in there. Stay positive and upbeat. It helps.... Cat. "Many false prophets are gone out into the world." 1 John 4:1

Re: New to this...9 year old daughter

Submitted by Mollysmama on Tue, 2007-05-15 - 11:45
Good morning Julie, I have an 11yo daughter who was diagnosed with E at age 9. From reading other posts on this site I feel she was wrongly diagnosed with asthma at age 7, when it was actually autonomic seizures. But of course, I didn't know that then. The main thing I'd like to say is that my daughter's E has changed. It started one way and now is different. Of the 9 known seizures she has had, the first three were similar and the others have all be different. I'll add you to my buddy list and we can talk.... d

Re: New to this...9 year old daughter

Submitted by Kim F. on Sun, 2007-06-24 - 16:00
Hi Julie, I am sorry to hear about your daughter. Try to give yourself a break-you are doing a great job as a parent. Unfortunately, things aren't always cut and dry and based on your story you wouldn't of had any reason to believe that your daughters "drama" could be a medical concern-much less epilepsy. As a parent you do the best you can with the information you have at the time. This is a journey, and you are your daughter's best advocate when it will come to treatment, drs., etc. My daughter is 9, too, and she has been having seizures since she was 6 months old. This year has been much harder on her because she is much more aware of her situation and concerned of how others might respond...just an fyi for you and your daughter. Take care of yourself and know that you are doing a great job. Let me know if I can help further. Kim

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