Journal Entry for March 11, 2009
March 11, 2009 3:38pm
Progress
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Dar327
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About Me
Dar327
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About Me
Mom to "Max"zilla, soon to be 13 yr. old with brain damage, scondary to epilepsy, stroke(cortical vision impairment), CP, OCD, Autism, SID, w/cog.skills at 28-33mos. I'm easy going&like to laugh, but don't "test the waters" when it comes to my son...you'll drown.
Mom to "Max"zilla, soon to be 13 yr. old with brain damage, scondary to epilepsy, stroke(cortical vision impairment), CP, OCD, Autism, SID, w/cog.skills at 28-33mos. I'm easy going&like to laugh, but don't "test the waters" when it comes to my son...you'll drown.
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Interests
Laughing and enjoying life!
Laughing and enjoying life!
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Recent Activity
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Journal
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What a crazy past 4 weeks!
March 8, 2008 6:11pm
This has been the most crazy past month (really 2 months) ever!
First off Max's IEP meeting at school was off the hook! The school …
This entry is private
This entry is private
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Journal Entry for October 16, 2007
October 16, 2007 10:38pm
Hi all! It's been a little while since I've updated, but it's been crazy around here. I'm keeping it together thus far, …
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Hugbook
Flower
Thanks for your sweet prayers and words of support Darlene. Even when I wasn't writing I would get on and read sometimes. Thanks for standing by me and praying for me when I really needed it. Glad to be back with my friends.
I’m With You
hey it's just great to hear from you! Hope things aren't too difficult at your end :-)
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Hug
hiya how are things with you. I am so sorry i haven't been there for you in the last few months - infact since August! Things have just been well complicated here. Take care. lemming x
Santa
Nice to finally hear from you, hugs to you and your son,,, hope you have a nice holiday,, hugs jen
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Hug
Hugs ope you have a good weekend.. How is your son doing? how are you ..? Hugs jen
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Photos
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Support Groups
Close Epilepsy & Seizures
Mother to an 11 yr. old with uncontrolled epilepsy secondary to many other dx's. It's a roller coaster ride that never stops! He takes 4 seizure med's (plus Ativan as rescue) and has VNS (takes 3 other med's 4 other dx's) and stil little control. He's also labeled MR. It's a daily struggle for our family. I hate it for him, he doesn't realy know any difference. It's all he's ever known. E sucks! Just wanted support from others who knows what it's like. Thanks.
Treatments
- Ativan Working / Worked
- It makes my son sleep for hours. It does seem to help with clusters. Hate the after effects of irritibility. takes 2mg after clusters.
- Depakote Not Working
- We stopped it shortly after starting it. Made my son very aggressive and delousional. He would be laughing one minute at nothing, then the next minute throwing things.
- Dilantin Not Working
- Son is deathly allergic to. It was pushed via IV at hospital 4 a 90min. sz and began splotching as quick as it went in and stopped breathing. scarest moment since birth.
- Keppra Not Working
- Son's sz's increased along with the Kepprage! Hurt himself & others. Also showed a rash from it. It sucked!
- Klonopin Working / Worked
- Son takes generic now. Helps him sleep w/out myoclonus disturbances at night. Still has the myocl. at night but at least get's to sleep threw them. Yey 4 us! takes 1mg pm
- Lamictal Somewhat Helpful
- son had short term relief but maxed out on it. no longer takes due to inability to increase and caused him not to be able to sweat!
- Neurontin Working / Worked
- Son takes generic now, but was on brand for a long time. Get's ok relief, takes 800 mg 3 x day.
Close Cerebral Palsy
Mom to 11yr. old with mild CP and many other diagnosis. His CP affects his legs and feet. Also affects his bladder and bowels. He get's botox every 6 mos. to help his tone in his legs and it's working. He's still not potty trained, he doesn't feel the urge to go. All his dx's are from birth due to severe lack of oxygen and suffered severe brain damage. He's currently functioning on a 24 to 33mos. level. Always in search of ideas for potty training.
Treatments
- Botulin Toxin Working / Worked
- My son get's 6 shots every 6 mos. in his calf muscles and it seems to work, he's been able to stay out of braces for 5 yrs. now.
- Occupational Therapy Working / Worked
- He get's OT for his muscle tone and lack of body awareness, plus sensory intergration disorder. It's working wonders for him.
Open Autism / Autism Spectrum
Mom to 11 yr. old with Autism and many other dx's. My son is very ridgid in his behaviors. He self stems, has mood swings, sensory issues (touch,taste,oraly adversed), he is obsessive, get's over stimulated easlie (usually seizes),aggressive behaviors and can be lovable, repetitive lang., and everything has to be in its place. He's a challenge daily, but we manage.
Treatments
- Behavior Management Somewhat Helpful
- We work with a behavioralist and she helps us read his body lang. and gives us needed ed. on ways to not esculate his behaviors. She also teaches us deep pressue tech.
- Early Intervention Working / Worked
- He was in EI birth - 3yr. It worked wonders for us.
- Facilitated Communication Working / Worked
- He get's Speech therapy every week. It's working great. His therapist is the best!
- Occupational Therapy Working / Worked
- He get's OT 2 x week for Muscles, sensory issues, body awareness, fine motor skills, and self help. It works wonderfully when he's in the mood for it.
- Pets Working / Worked
- Had a dog (passed away) that my son loved. The dog was very sensitive to his needs. The 2, best friends. We have 2 cats that have grown up with him & he loves them.
Open Blindness & Visual Impairment
Type: Legally BlindMom to 11 yr. old with Cortical Vision Impairment via stroke right after birth. Damaged whole occipital lobe and is legally blind. Being so young when it happened, his brain picked up some vision. His other eye dx's right sided Hemanopsia,far sighted,blurred vision,poor depth perception,and possible color blindness. He has other dx's and takes a ton of med's that can contribute to some of the eye issues. It's a daily stuggle knowing 1 min. he knows what he see's and the next he doesn't.
Open Caregivers
caregiver of an 11 yr. old boy with Epilepsy, CP, Autism, OCD, SID, stroke, extremely restricted vision, and MR. He's 11 going on 3 and it's been a long road to 3!
