Journal Entry for October 3, 2009
October 3, 2009 4:23pm
Sometimes I feel so alone in the world....especially today. Came here to see if I had any messages or hugs and there was nothing. Guess I …
TBonesmom 
10:25pm, October 12, 2009
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About Me
TBonesmom
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About Me
Hello!! I am the single mother of a beautiful 10 year old boy who has already lived more than most. TBone has Myoclonic Astatic Epilepsy, OCD, PDD and a Congenital Heart Defect. He is severly developmentally delayed and has some mobility issues. I work full time and care for TBone full time. I believe that TBone is a gift from God and that there is a reason for him to be one of God's Chosen Children. Even so, we strive to find an answer that will help him live a more normal life. TBone has had 2 VNS surgeries and a Corpus Callosotomy, Split Brain Surgery, May 8, 2008 in order to help control his seizures. The CC was quite an extensive surgery, but he is doing alright. He worked very hard to get back his walking and talking abilities. He is scheduled for resection surgery in November of this year. We know that God is Good and God is in Control!!
Hello!! I am the single mother of a beautiful 10 year old boy who has already lived more than most. TBone has Myoclonic Astatic Epilepsy, OCD, PDD and a Congenital Heart Defect. He is severly developmentally delayed and has some mobility issues. I work full time and care for TBone full time. I believe that TBone is a gift from God and that there is a reason for him to be one of God's Chosen Children. Even so, we strive to find an answer that will help him live a more normal life. TBone has had 2
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Interests
I love horses!!! I used to ride quite a bit, but not so much now since taking care of TBone is a full time job. I love to travel and read. Most of all, I am always searching online to find ways to help my son live a better life.
I love horses!!! I used to ride quite a bit, but not so much now since taking care of TBone is a full
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Recent Activity
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Journal
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Progress is Good!!!
June 6, 2008 10:15pm
Hi Friends!!
Things are going well for TBone!!!!! He has still only had 5 grand mal seizures since surgery 4 weeks ago …
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An UPHILL Battle
May 14, 2008 12:24am
A quick note to update everyone on TBone's progress. He is doing a little better, but is really struggling from the disconnection syndrome. …
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Better Days.......
April 21, 2008 7:40pm
Hi All!!
TBone is still having lots of seizures, but we are counting down the days now. 2 weeks and 3 days until surgery. I am nervous, …
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TOUGH DAYS LATELY....
April 12, 2008 6:44pm
TBone has sure been having a lot of tough days lately.... If he isn't having seizures, his behavior is awful and uncontrollable. It makes …
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Hugbook
Hug
sending a lot of love and hugs your way.................will always be in my heart........got you and tbone in my prayers...i pray he is well...........have a good day............sending gods love............love ya...hxhx
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Hug
good morning, having faith in god,,,, all things are possible..............gods love...love ya...hxhx
UR Welcome
Nice to hear from you. I hope your son is doing well. We are going threw a battle of seizures and growing up. I am coming to grips with having a child moving into high school next year. A lot of things are being brought to my attention now about his future care and It's hard to hear. We are taking it one day at a time.
Miss ya! Darlene
Prayer
praying for him every day
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Little Love
good morning, i pray all is well with you and tbone........lets never forget, no matter what the problem may be....jesus will correct the problem...........you have a blessed day........gods love........hxhxhx
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Photos
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Support Groups
Close Epilepsy & Seizures
TBone began having TC seizures at 18 months and was diagnosed with Lennox Gastaut when he was 2.5. Only recently to be diagnosed instead with Myoclonic Astatic Epilepsy. He has been on countless medicines, VNS and even tested for resection surgery which he is not a candidate for~his seizures are throughout the brain. He also suffers from OCD, Impulse Control Disorder and various behaviorisms. Even so, he is in public school and really working hard. He is such a sweet boy!!!
Treatments
- Ativan Not Working
- Helps seizures, but makes him very hyper and unable to sleep.
- Avoid Certain Foods / Chemicals Working / Worked
- Clobazam Not Working
- Depakote Somewhat Helpful
- High liver levels after taking for a long time~extreme weight gain
- Diastat Working / Worked
- Felbatol Not Working
- Keppra Not Working
- Klonopin Not Working
- Lamictal Not Working
- Surgery, Brain Too Soon to Tell
- His seizures are generalized and he is not a candidate. UPDATE: As of May 8, 2008 TBone had a Corpus Callosotomy, Split Brain Surgery. He is doing okay right now, suffering from Disconnection Syndrome which should only be temporary. He has only had one grand mal seizure since his surgery and this is day 10!! We hope he continues to do well.
- Tegretol Somewhat Helpful
- Topamax Not Working
- Trileptal Not Working
- Vagus nerve stimulation Somewhat Helpful
- He is now on his second device...the first one was implanted when he was only 4 years old and the battery ran down after only 4 1/2 years because of the high settings.
- Zonegran Somewhat Helpful
- myoclonic seizures only
Close High Blood Pressure
TBone has had high blood pressure since he was quite young and it was always attributed to his weight and epilepsy meds. We just found out that he has Coarctation of his Aorta and is having surgery to fix it on Feb 11, 2008.
Open Coronary Heart Disease
TBone has Coartation of his Aorta...a congenital defect.
Open Pancreatic Cancer
My sweet mother, now 72 yrs old, was dx with Stage 4 Pancreatic Cancer December 24, 08. She is receiving Chemo right now and is doing okay...lost a lot of weight. Drs. told her only treatable, not curable. My heart is broken.
Treatments
- Chemotherapy Somewhat Helpful
- Tarceva Working / Worked
