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Thread: CN Central: JANUARY 2016 UPDATES!

  1. #21
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    Tamie, I'm so sorry to hear about the newest complications. It's just so hard to see such distress and feel so helpless. Praying the the test show something that can be easily fixed. Keep us posted.
    Rose Thank you Kathleen was back to her old self by morning. I will let you know how we make out at the neurologist.
    Funnylegs, So sorry to hear about your friends friend... Has she been to the ER? Maybe they could do some tests and she could see a neurologist quicker. Faiting could certainly be considered an emergency. Also taking her blood pressure could rule out issues there. I know from researching Kathleen's low BP that it can cause fainting. If she goes to the ER or the Dr. She should be prepared for questions about her spells that may help speed up diagnosis. She should try to keep a log of the episodes. Keep us posted.
    Maary Grace

  2. #22
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4)))))) ~

    Your friend should have a complete blood work up (CBC, CMP) to determine whether she has any metabolic issues (low potassium, low glucose, low sodium, etc.) as well as to check her platelets, as she could be anemic. She should also have a cardiac workup. She should consult her personal physician (family doc, for example) and present her symptoms, and that doc should order a battery of tests and refer her to a cardiologist, if needed.

    She can go to the ER, of course, it's just that it's more expensive. If she faints again, she should go directly to ER. Otherwise, she should see her regular physician for a complete physical.

    I hope that she gets the help she needs.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #23
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    Tyler goes in for his CT scan at 3:20 this afternoon. Praying they find something fixable or at least some idea of what the problem is. He had the worst shrieking spell last night that I have seen. Tore my heart out to watch him. Lasted 1 1/2 hours. Gave him Motrin and 15 mg of Valium and still it continued. He was drenched in sweat from writhing, shrieking, seizing, coughing and choking. What a mess. All of the blood work came out fine, urine tested negative for infection. Have no idea what we will do if the CT scan is normal. Onward to the sonogram for gallstones. Someone has to figure this out. He is going to burn out his brain if this continues. Been taking videos on my phone so the doctors can see what we are talking about. So glad we have them, cause when we go into the doctors office, he is quiet and not in any distress. So very frustrating.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  4. #24
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tamie & Tyler)))))) ~

    I hope that the CT scan gave you some clues today. I can't even imagine 15 mg of Valium. The most we ever give Jon is 2 mg (Ativan) and that is to stop a tonic clonic. Good blood work and no UTI is excellent news. But something is definitely not right, so I pray that the doctors can determine the cause of Tyler's distress. And I pray for rest for all three of you. I'm sure you are beyond exhausted and stressed.

    We've moved to a new thread for February, so please post there with your next update, so we can keep the conversation going.

    Healing prayers continuing ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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