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Thread: Lost parent looking for advice/what should we be asking neuro

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lostparent)))))) ~

    Seizure activity may not show up on an EEG, if seizures are not occurring during the test. If no seizure activity is noted with this EEG, you may want to ask your neuro for an ambulatory EEG, which your son can wear at home. I hope that they make a pediatric sized machine.

    Please investigate Nisonger Center, as I recommended. It's a great resource and could provide you with guidance and referrals. Just begin by checking out their website.

    Parenting a child with complex medical and neurological issues is often quite frustrating. It is rare, when the answers are obvious or easy. Every parent here knows that frustration, often becoming our children's detective, when medical professionals are grabbing at straws or stymied.

    In my many years of experience with both of my sons, there were countless times, when the doctors were wrong. We can start with telling me that they wouldn't live to be 5, 10, 15, 21, 30, etc.

    I carefully studied and evaluated every drug given to my sons from seizure meds to antibiotics to thyroid meds. I'm doing that now for my husband, and I just emailed his doctor to tell him about the adverse side effects, which I knew he'd have, from taking a gastric drug.

    I can't even count the number of neuros my boys saw in their lives, who were completely out of their wheelhouse trying to treat them. They had no idea, so they just prescribed whatever the going AED was at the time. One neuro admitted to me that he'd never treated "anyone like your sons," and that's when I told him I knew that from the beginning and walked out of his office.

    Your average physician is going to be less effective than specialists, who see children with complex medical and neurological issues, regularly. So, it's good that you're going to Cincinnati Children's. But, I've also been disappointed in the University and Children's hospitals in our experience. We had a greater expectation than the results of our consultations. But that didn't stop us from trying.

    My sons were undiagnosed, which presented constraints in their treatments. They didn't have a peer group for comparison.

    You may want to get used to hearing the word, "rare."

    Try to find some time to relax, breathe, and release your stress, because this is a long and arduous journey. Learn all you can from the links we are sharing with you, because knowledge is power, and you need to be able to understand all that the physicians are telling you.

    And love your sweet little boy with all of your hearts and tell him constantly how wonderful and beautiful he is.

    Your family is in my prayers.

    Love & Light,

    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  2. #22


    Thanks rose. I know we tried going with OSU before ( for his possible CVI issue) but there was an issue with insurance. Depending on how things go next month we will try again with OSU. Dealing with insurance is as frustrating with dealing with doctors most of the time.

  3. The following user says "thanks"

  4. #23
    Distinguished Community Member
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    You’re welcome! Rose is right about seizures not always be detected on EEG and some of the links mention this. I think some EEGs are done with sleep deprivation to induce seizures during the EEGs. I have a very very mild heart murmur as well and was told by a cardiologist that in some people with murmurs the blood can flow backwards through the hole in the heart and away from the brain so if the blood flowed backwards when the murmur was there it may explain the HIE maybe? Just a guess.

    My advice to you if the next tests yield nothing is to keep persisting if you feel something is not right. Keep looking for a doctor who you feel is properly concerned and listens to you. If you son has a rare neurologic problem, run-of- the-mil doctors may not pick up on things that are important. Keep trying to get some kind of definitive diagnosis for your son. A definitive diagnosis of Cerebral Palsy gave me access to services that your son may also need for accessing his education as he gets older. A diagnosis gives your son better ability to fight for his rights, get more individualized treatments, and a possibility of gaining a community of friends with the condition who can serve as mentors to you and him. I was blessed to meet many wonderful people with Cerebral Palsy. Keep researching and observing your son like Rose said. Keep records of symptoms and times symptoms occur. Keep taking videos.

    I’m so sorry for your insurance causing problems! That’s awful! Keep us updated please?
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films!

  5. #24


    Having read some information on the epilepsy foundations website it seems to quote ď approximately one half of all EEGís done for patients with seizures are interpreted as normal ď

    This is very frustrating to read and makes me question having additional EEGís done. Itís such a horrible experience for him it makes me wonder why Iím allowing a 3rd one to be done. He literally screams the entire time and the look on his face kills me.

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