Re: Jennie- Mayby seisure? Need HELP!

[Guest guest]

I can't help you much with the seizures as my girls haven't had the real bad types of them. Asenath has absence seizures (petite mals) mostly and Zipporrah has only had suspected ones surrounding her two stroke episodes. Neither were very bad, just lots of trembling and mouth movements. I do agree that a padded bed might be a good idea as that is what the hospitals do. That plus some mittens/gloves possibly might help. As for feeling upset and worried I do understand that. It seems as Mito moms we have to deal with many issues we really so not want to face. When today seems overwhelming it can be a little hard to think about tomorrow and what it might bring. I know it is hard, but we really do need to try to keep in the moment and not stress over what could happen. I know the times I stop to think about what is going on in Asenath's brain, I start to panic as disaster could strike at any moment without a warning. But if I allow myself to stay there, I will not only be scared and depressed, but I won't be much good for my kids either. My best cure has been a hot bubble bath and because I have strong faith in God, prayer and reading God's Word really help me focus and keep strong. Taking time to yourself is so important. Even if it is a couple minutes as you are doing tonight, can make all the difference also. This group has been there for me and my family and it is so nice to know there are people out there that REALLY care about us, isn't it! Always remember I am here if you want to talk. If you need a phone call you can write me at honeybear50317@... to get my phone number as well. Sometimes words on paper aren't enough and a human voice is what's needed. (That goes for all of you girls!-feel free to ask for my number) Try to get some much needed rest too! Darla Re: Mayby seisure? Need HELP! shannon: he gets the bruises from hitting at his face and hitting the wall . when he was in the hosp. his dr. saw how he thrashed . i will try the gloves and have tried the padding but he still hits himself. i have been up now for 48 hrs because logan s seizures have gotten worse and he is real unstable . any ideas would greatly be appreciated. it seems he knows something and is clinging to me alot. i dont know what to do. i am very frustrated . thank you for writing me and thanks for the great ideas right now i will try anything . i wish i could help him more but the dr.s say sometimes they get harder and things will get worse. again thank you.your friend jennieaddwillbebad@... wrote: Well lets see ... you can put coushins around the bed frame .. you dont! want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his little face.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

darla : thanks so much for the words of advice. i have been praying and i noticed God helped me find this site . do your babies both have a mito disease? like i said i have 3 and all 3 of them have overcame great obstacles . my 11 yr old had lymphatic cancer and is a survivor 2 yrs ago she had slipped caperal femural epiphysis in both hips and had to have bone grafs put in of course we hit the 5% and her right hip did not take so now she has a screw in it .if her hip doesn't close she will have to have hip replacement. my 4 yr old is mildly autistic they are testing him right now to see which catagory he is in. and logan who will be 2 mon has leighs disease. i try not to think too much of the outcome and i try to be positive i guess these past couple of nites with him in the hosp and the seizures have tested me . we have had a really good well spell for about a month now and now we are back in and out of the hosp again. this has been so nice meeting parents like you

.. if anything you are lifting my spirits thank you jennieDarla Klein wrote:

I can't help you much with the seizures as my girls haven't had the real bad types of them. Asenath has absence seizures (petite mals) mostly and Zipporrah has only had suspected ones surrounding her two stroke episodes. Neither were very bad, just lots of trembling and mouth movements. I do agree that a padded bed might be a good idea as that is what the hospitals do. That plus some mittens/gloves possibly might help.

As for feeling upset and worried I do understand that. It seems as Mito moms we have to deal with many issues we really so not want to face. When today seems overwhelming it can be a little hard to think about tomorrow and what it might bring. I know it is hard, but we really do need to try to keep in the moment and not stress over what could happen. I know the times I stop to think about what is going on in Asenath's brain, I start to panic as disaster could strike at any moment without a warning. But if I allow myself to stay there, I will not only be scared and depressed, but I won't be much good for my kids either. My best cure has been a hot bubble bath and because I have strong faith in God, prayer and reading God's Word really help me focus and keep strong. Taking time to yourself is so important. Even if it is a couple minutes as you are doing tonight, can make all the

difference also. This group has been there for me and my family and it is so nice to know there are people out there that REALLY care about us, isn't it! Always remember I am here if you want to talk. If you need a phone call you can write me at honeybear50317@... to get my phone number as well. Sometimes words on paper aren't enough and a human voice is what's needed. (That goes for all of you girls!-feel free to ask for my number) Try to get some much needed ! rest too !

Darla

Re: Mayby seisure? Need HELP!

shannon: he gets the bruises from hitting at his face and hitting the wall . when he was in the hosp. his dr. saw how he thrashed . i will try the gloves and have tried the padding but he still hits himself. i have been up now for 48 hrs because logan s seizures have gotten worse and he is real unstable . any ideas would greatly be appreciated. it seems he knows something and is clinging to me alot. i dont know what to do. i am very frustrated . thank you for writing me and thanks for the great ideas right now i will try anything . i wish i could help him more but the dr.s say sometimes they get harder and things will get worse. again thank you.your friend jennieaddwillbebad@... wrote: Well lets see ... you can put coushins around the bed frame .. you dont! want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his li! ttle fac e.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com