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Raising Special Needs Kids Raising Special Needs Kids

Prayers or Thoughts --Do you have some that other moms just would not even think of?

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The one I have this morning--

Is Lord please allow my son some year to just poop on his own without all of these medicines or suppositories-all the doctors are telling us that will not happen-but I really prayed this morning for that-He has not pooped since Monday-

Yes you moms understand we have prayers or thoughts that other moms would not even think of!

Take Care

by on Sep. 22, 2012 at 8:16 AM
Replies (11-19):
thedathree
by on Sep. 22, 2012 at 9:25 PM
Quoting Elyssa414:


Aw that's a tough one. My son had infantile spasams. I didn't have to do any surgery but seizing for a year straight every day caused brain damage. I felt so helpless. He has had surgeries but never in his brain. I'm glad to be getting to know other moms who have rough emotional issues too.
Elyssa414
by Elyssa on Sep. 22, 2012 at 9:33 PM
Infantile spasms are the worst! Did you do the ACTH? Elijah did two rounds of ACTH, but he had well over 300 seizures a day for years and years- which also caused a lot of brain damage.

Quoting thedathree:

Quoting Elyssa414:


Aw that's a tough one. My son had infantile spasams. I didn't have to do any surgery but seizing for a year straight every day caused brain damage. I felt so helpless. He has had surgeries but never in his brain. I'm glad to be getting to know other moms who have rough emotional issues too.
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thedathree
by on Sep. 22, 2012 at 9:56 PM
Quoting Elyssa414:


Yes I had the steroid shots. We stayed in the hospital a few nights and then he came home I gave them to him. The neuroligist went for a year bullshitting around with medications that didn't wwork for a year before letting me do thw injections. I dont know how many a day he had but he never stopped and would cry a lot and they would last about a half hour or more at least a few times a day. and then other times just random 15-20 minutes. I can't count but they were worst if he was sleeping. He would get woken up having them and cry and then never woke up from any type of nap or sleep without seizing. Honestly I don't know how I made it through that. My heart would sink and I'd feel sick to my stomach how he would cry and cry. I often wonder how much brain damage was from prematurity and how much from being born at 24 weeks. I did the shots less than a month or about a month I think.I'm not so sure he was a year or two and is 11 now and so much has happened since then.
thedathree
by on Sep. 22, 2012 at 9:57 PM
Quoting Elyssa414:


How old is your son? was he a Preemie? Did he cry through his seizures?
Elyssa414
by Elyssa on Sep. 22, 2012 at 10:41 PM
My son is 10 now. He wasn't a premie, in fact he was totally typical and healthy until 15 months when he began having late-onset infantile spasms. We did the shots for 3 months both times but the seizures came right back, then we tried tons of other meds that never helped, then brain surgery which stopped them for 9 months when he was 3. Then we tried the ketogenic diet and the VNS and lots more drugs and finally his 3rd and 4th brain surgeries 2 1/2 years ago stopped them again! He's been seizure free ever since!
His biggger seizures made him cry a lot, but mostly with the IS and head drop seizures he was just having them so much that he was like a shell. He was so out of it and tired and confused.... It's amazing having him back now, when he's seizing all day and night I MISS him so much! He's just not "here" ya know?


Quoting thedathree:

Quoting Elyssa414:


How old is your son? was he a Preemie? Did he cry through his seizures?
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CameronsMommy23
by on Sep. 23, 2012 at 12:31 PM
Mine is for me to make the best decisions for Cameron. Like whether to try more ADHD medicines or not, whether to change his IEP or not, how to discipline him in a way that matches his needs and mentality, etc.
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strategic406
by on Sep. 23, 2012 at 4:11 PM
1 mom liked this

My prayers go out to all of you very brave, strong, resourceful parents. I have dealth in the past with some of the issues you are now facing. When you are feeling overloaded repeat to yourself these words: serenity (and/or) tranquility. They are like a quick tranquilizer for the mind. Also, I would like to offer you a peaceful meditation from a sixteenth century mystic to say to yourselves when the challenges seem too great:

 " Let nothing disturb you. Let nothing frighten you. All things are passing away: God never chages. Patience obtains all things. Whoever has God lacks nothing. God alone suffices."

 

darbyakeep45
by Darby on Sep. 24, 2012 at 5:14 AM
1 mom liked this

Mine is for Brady to continue growing and stay as healthy as possible:)

lifeisajoy
by on Sep. 24, 2012 at 7:12 AM

Hugs Elyssa!

Quoting Elyssa414:

It's an implant that sends an electrical shock to his brain through his vagus nerve for 30 seconds every 3 minutes.... It's the last of his seizure treatments that he's still on, and should be running out of batteries soon- the decision of whether or not to have surgery to change the battery is very complicated and I'm struggling with it right now... :/

Quoting thedathree:

Quoting Elyssa414:

Sending positive thoughts for all of you!!



Mine is for wisdom to make a decision about whether or not to replace the battery in Elijah's VNS...

what is a vns?


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