Does anyone have a child that doctors can

Gretchen - posted on 08/28/2009 ( 3 moms have responded )

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My name is Gretchen and my son Caleb is 2 and is a twin. He is the only one with a serious seizure disorder, severe development delays and he has a gtube. He has gone through multiple blood work ups, muscle biopsy's, eegs, cts you name it and it seems he has had it done. The top part of his brain never fully grew and that part that is there is put together in a abnormal way. The said he most likely wont be able to walk or talk. I fought so hard to get the few answers that I do have about my son. I see early intervention and thank God for Shriner's Hospital. He is on Keppra, Phenobarb, Topamax and Prevacid. I feel so alone and overwhelmed with very little help. I have to stay at home due to his condition and there father works very hard but it never ends. With all the special equipment that is needed and finding a home that is handicap friendly while still trying to take care of his very active twin sister Isabel. I need any advice and support I can get. I get on this wonderful website everynight and THANK GOD FOR ALL OF YOU! I just struggle to only take things day by day but I am look at those doctors faces and sometimes they look hopeless and I just don't want to put my beautiful boy through any more tests. Any advice or suggestions! Thank you!

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Sara - posted on 09/07/2009

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I have a 14 year old that has seizures and i have them now as well. i dont know that i can give you a lot of advice on what to do or what not to do but i will help you as much as i can. the most important thing that i found that you can do is remember that as scared as you are watching your child go through this he or she is more scared. and that you need to remain calm and continue speaking to the child. my son's dr actually told me not to put him in a glass case to remember that he is still a child and to let him do as much as he possibly can for himself. matt is doing good right now and he is on a lot of medications but he hasnt had a grandmal in 4months and he still has his pettit mal seizures but he is doing really good. thank god. there was a lot of years that he scared the hell out of me and i didnt work and staye home scared to death that something would go wrong but then he started school and everything just kind of fell into place. dont get me wrong his last grandmal seizure was really bad and it hospitalized him. but i am hopeful that the dr's find the right meds and he stops having them all together. i hope that this gives you some hope. feel free to contact me sarapicken@yahoo.com

Danielle - posted on 08/29/2009

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I agree with Beth! We just can't give up, no matter how dark, bleak, and hopeless the situation may be presented to us... I say presented to us because I strongly believe that that's all doctors do. They present us with the diagnosis, sometimes a prognosis, treatment options, and once in a while, if you're lucky, a starting off point to find support groups. What we do with that presentation is completely up to us. I felt lost in a dark maze when I first started dealing with therapy, neurologist appointments, ophthalmologist appointments, tests, and medications. I felt like I was the only one out there that had to try and figure everything out. Which doctors do I take her to? How often should I go? What questions do I need to ask? What do I do if I don't like their 'presentation'? The questions never ended! Luckily, as I got going and as I made contacts and doing research, it got easier. My best piece of advice, other than to ALWAYS follow your gut, is to never discount any option just because it didn't work for so-and-so. What works for one child/family may not work for the next but you won't ever know unless you try it. Weigh the pros and cons of each option 'presented' to you and go from there. And don't be afraid to do research of your own and 'present' it to your child's doctors- be pro-active and that light at the end of the tunnel will get a little brighter everyday! Good luck and keep us posted on your son!

Beth - posted on 08/29/2009

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Hello Grethen,



I have a 15 month old son, Gage, who also has a seizure disorder, and Trisomy 13. He has a very long line of medical issues including hearing loss, CVI (vision loss due to seizures) and heart issues, just to name a few. He is severly developmentally delayed, and we also get OT and PT through early intervention. He is also on the same meds as your son plus propanolol, and kolonopin. We are also going next week for a consult on a gtube. It seems like our sons have alot of things in common. It is very overwhelming at times, with multiple Drs visits, tests, med changes, etc. It is very hard not to feel alone in this, even with supportive family and friends. I also stay at home, because really I dont trust anyone else to do for him what I do on a regular basis. I know you have probably heard the same advice over and over, as I have, but there has got to be a light at the end of the tunnel. We have to stay strong for our little ones, and we have to be thier voice, and advocates. Never give up hope on what your child will be able to do or accomplish in life. There are new medical discoveries everyday! I know how hard it is to see your child go through test after test after test. It is heart breaking, and I believe I cry more than he does, but again, we have to be strong for them. I wish you and your family all the best of luck, and will keep you all in my prayers. Please feel free to write at any time, even if its just to vent!



PS There is a thread, dont know word for word the title, but something like dealing with the emotinal stress of having a child with seizures, and there is a mom, Heather, and what she wrote brought me to tears. If you get a chance, read it, it may give you some additional hope!

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