new e

[aboizd1]

Hi guys, never been in this room before...I can't say I'm a mom per say but posted else where it just might not fit...

I'm very close too/parent my little cousins, I've been with them for 9 years. One of them already has medical complications. She just turned 11, is diabetic, a celiac, had a stroke when she was a baby- she is a great little chicky- and we've known that she has abnormal brainwaves (same as mine) but it's never come up until today... she was at home with her mom..and she had her first seizure..

and I guess it just makes me really sad to think that on top of everything else she's got to have this too. She is embarrassed to have this now as well, doesn't want people to know. Makes me feel like I need to be more outgoing about my e so she will see that it is okay. I get the parent role now, and know why my mom wouldn't let me sleep with the door closed or go swimming or anything...I'm scared for her and I know I shouldn't be-I have to move on so she can but-it makes me nervous knowing that it has surfaced, I'm nervous to look after her :s

What do you do with your kids that want to swim and such? is it a yes or? I'm 21 so I can decide for my self that maybe it is or isn't worth it, I'm not going to be upset if I don't go to the pool...but at 11- swimming is just a regular thing with friends- how do you say no to your kid?

What do you do with someone that has e? I have the seizures but i don't know what to do with me, therefore i don't know how to look after her now :S

any help??

 

[epileric]

It is possible the coeliacs disease is connected to the epilepsy. Do a search for coeliacs on the site (3rd link from the left at the top) & see what you find.

As far as her being embarrassed about having E. I think you should just let her see how comfortable you are but don't go out of your way to be more "comfortable" than normal. In reality not everyone is accepting towards it & at that age it's much more of a big deal. I remember the abuse I went through in high school when people found out.

 

[Crystal11]

My twin sis and I and my best friend all have Epilepsy. We live together but are adults. With the swimming and other possible dangerous activities, its probably the best idea to talk to the parents or doctor so see if her seizures are frequent enough or not. If not, then usually its okay to go swimming as long as someone is able to watch her and be with her just in case something happens. When I go swimming we all go together- even though we all have epilepsy. The best thing to do is go with someone who doesn't have Epilepsy. Most likely everyone won't have a seizure at the same time- but with any medical condition that isn't controlled- its best to have someone that can help.
If i go swimming with my friend and she has a seizure i am able to help but it also puts the both of us in danger since we never know when seizures will happen. It definitely helps to have someone trained in first aid present too.

Best of luck with everything.
My twin and i have multiple disablities and out of those, Epilepsy is the most difficult but not impossible to deal with. We are both deafblind with residual hearing and vision and have complex partial seizures. It definitely helps to have someone trained in first aid present too.

Take care,
Crystal

 

[Meetz1064]

Hey ho there,

aboizd, it's been awhile since I've seen you---or we've just missed each other, I guess. How ya been doing??

*chuckling*

Epileric's reference to searching for celiacs on the site is a good suggestion, I am one of the newer ones. Formally diagnosed in April. I had been on the GARD diet prior to that, and it had been helping with seizure control quite well. Now that I'm on the celiac diet, I'm still maintaining seizure control quite well, but the diet is stricter in some ways. But, I'm happier.

My body is FINALLY starting to heal, and the 2 new types of E that they found at the beginning of the year are not as much of an issue. I have had MAJOR absorption issues--my body started to lose quite a few vitamins, and the bruising that was going on made the docs think I had cancer at first. All because of the celiac disease. (There's one that's STILL healing, and it's from May!!)


As long as I maintain this diet, don't stray, and stay on my meds for now (I'm going to try neurofeedback as soon as I can get the money up) then I will continue to do just fine. I am hoping, that over time, these last 2 types of E will just *on knees praying* GO AWAY!!! I really am convinced that once my body is TOTALLY rid of all gluten (I have made a few mistakes along the way) and stay that way for at least 18 months, then that will happen.

But do go check out the Library. RobinN is our nutrition guru, she can help, too.

As for dealing with your niece's desires to go swimming--I'd say talk to the doctor first. Get her stabilized, and then have someone in the pool with her for the time being, and an adult around at all times. Not breathing over her neck mind you, I hated that as a kid. But, if the pool's in the back yard, say right in the kitchen making cookies or dinner or something. That was how my Mom (or Dad, now that I think about it) always got around it.

Same thing goes for biking, hiking, etc. She's GOT to have someone with her at all times that is RESPONSIBLE--a buddy. Usually at this age, the buddy system is still going on, so that shouldn't be too big of a deal. This is important, because if she falls and gets hurt, hits her head, someone is with her, and can get help. ***Her friends/parents NEED TO KNOW WHAT TO DO if she has a seizure around them, no matter what type it is.***

Finally, and you probably know this by now, I am a big proponent of E journals. Help keep track of things like sleep patterns, her cycle, eating patterns, and TV/computer/video games. They're all possible triggers. Of course, I have a more detailed list if you'd like it.

I wish you the best of luck...I understand how you feel, I really do. It's hard watching someone you love go through things like this. But don't worry, we'll be here to help you. :bigsmile::bigmouth:

Feel free to give me a holler (OK, a PM will work) if you need anything. I'll be around. :bigmouth:

Take care,

Meetz
:rock:

 

[aboizd1]

hey guys- thanks for all your replys

meetz- are you meaning that gluten can affect seizures if your a celiac? (I haven't looked into any of it yet...)

 

[Meetz1064]

Yes, gluten

CAN affect your seizures if you're a celiac. It's a food allergy--it's for some of us, a NEUROTOXIN, like MSG or caffeine is to many. Some people do get over it, some do not.

Keep in mind though: It DOES take the body AT LEAST 8 months to get rid of all gluten that is in it. So from the last day that you have eaten ANY type of gluten, start moving forward, and 8 months from then, you can be considered gluten-free. But if you get any in-between you start over.

I have a REALLY good book, actually a couple, but the one I'm thinking of is full of resources, recipes and the like. It is called Gluten-Free Diet by Shelley Case. Found it on Amazon. Think I spent $20 or so. Recipes are YUMMY. Sure, things taste a bit different, but we all adjust.

 

[aboizd1]

Huh..that's very intersting- I definitly don't believe she has as strict a diet as she should... i'll definitly look into it- and you say that book is worth ordering?

 

[Meetz1064]

Yup, as

a matter of fact, it's sitting right next to me, so I can decide what to make for dinner this week.....

 

[skillefer]

Hi aboizd1! My mom had to make the call on my swimming. And trust me, since I grew up in a house on a lake, that was a bit tough. But basically, as far as swimming was concerned, I could only go if my younger brothers (who were better swimmers) or a friend went with me.