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

  1. #61
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    Quote Originally Posted by Lostparent View Post
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    Sorry I’ve not been posting lately, busy busy lol.

    They think he has deep short simple focal seizures, I was mistaken when I though there was 2 types.

    I hope everyone has a happy thanksgiving
    So Sorry for my delay in posting as well. While I'm not happy your son has focal seizures I'm glad you are finally getting somewhere with figuring out what your son needs. That is definitely something to be thankful for. Happy Thanksgiving to you and your family! Keep us posted.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  3. #62
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    ((((((lostparent)))))) ~

    I'm so sorry, again, that your son is having seizures, but having a diagnosis is a starting point for proper treatment. What treatment has been recommended? I hope that the neuro will work to target the specific seizure type with the right AED or other treatment.

    Your life is a whirlwind and will continue to be so. I hope that you were able to have some peaceful time to celebrate Thanksgiving.

    We are here for you, whenever you need us.

    Love & Light,



    Rose
    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.

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  5. #63

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    Well we finally got a response from his first neuro in regards to the 2nd opinion. Copy/paste

    Dr.Slaughter:
    1. As I am not an ophthalmologist, I defer to Dr. McGregor regarding Evan's vision diagnoses. I agree it is possible he has some mild cortical vision impairment (vision impairment not due to an eye problem per se, but due to the brain's lack of interpretation of the signals).

    2. I appreciate the input from Dr. Vawter Lee in Cincinnati. I also received a copy of her note. My prior opinion stands, and I also reviewed the video I have again- that I am not confident that these are seizures, and my best advice would still be to capture them on an overnight study. He is going to have the sleep study in February anyway, I believe, so I think we might as well do the LTM EEG at that same time. However, it is parents' preference in the end whether to do the EEG as part of the sleep study.

    I do not think Keppra is going to hurt him, so if they want to give that a try and see what his response to that is, I am not opposed. However, if the events continue, I would definitely not want to escalate to other medications before confirming electrographically that these are seizures. With Keppra, they may see behavior changes as a side effect but otherwise it is usually pretty well tolerated.

    Thank You,
    NCH Neurology

    Pretty much what I expected from her, looks like we will be changing neurologist.

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  7. #64
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    ((((((lostparent)))))) ~

    I think you are wise to seek a new neurologist. The current neuro is deferring to another doctor out of her specialty regarding CVI. But, when she's competing with other neuros in her specialty, she stands her ground, even when they all disagree with her.

    It's probably safe to say that most complex neurological issues are difficult to diagnose and treat. So many of our members here have encountered obstacles in obtaining appropriate diagnoses. My sons never had an official diagnosis, just generic labels to satisfy insurance codes.

    Since there seems to be wide agreement that your son is having seizures, it seems prudent to seek another neurologist for your son.

    I disagree with the current neuro that Keppra can't be harmful. Every AED can be harmful in various ways. The most important factor is finding the correct AED to treat the specific type of seizure. Benefits versus risks is always something to consider with any medication.

    You may want to ask the prescribing physician, "Why Keppra? Why not another AED? Or a change in diet? (As in the Keto Diet) Or CBD oil?" It is reasonable to ask for a justification for using any kind of pharmaceutical or treatment. For your son, or you, or any of us.

    We should always be well informed, before we make any decisions for ourselves or others.

    Keeping you all in our prayers that you find the best physicians, who will care for your son and you and your wife, and lead you in the right direction for the best care for your son.

    Love & Light,



    Rose
    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.

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  9. #65
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    Quote Originally Posted by Lostparent View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Well we finally got a response from his first neuro in regards to the 2nd opinion. Copy/paste

    Dr.Slaughter:
    1. As I am not an ophthalmologist, I defer to Dr. McGregor regarding Evan's vision diagnoses. I agree it is possible he has some mild cortical vision impairment (vision impairment not due to an eye problem per se, but due to the brain's lack of interpretation of the signals).

    2. I appreciate the input from Dr. Vawter Lee in Cincinnati. I also received a copy of her note. My prior opinion stands, and I also reviewed the video I have again- that I am not confident that these are seizures, and my best advice would still be to capture them on an overnight study. He is going to have the sleep study in February anyway, I believe, so I think we might as well do the LTM EEG at that same time. However, it is parents' preference in the end whether to do the EEG as part of the sleep study.

    I do not think Keppra is going to hurt him, so if they want to give that a try and see what his response to that is, I am not opposed. However, if the events continue, I would definitely not want to escalate to other medications before confirming electrographically that these are seizures. With Keppra, they may see behavior changes as a side effect but otherwise it is usually pretty well tolerated.

    Thank You,
    NCH Neurology

    Pretty much what I expected from her, looks like we will be changing neurologist.
    Hi Lost Parent,

    Thanks so much for the update! It really bothers me when doctors like your current neurologist can’t admit when they are wrong. Yes.Please, please go with the new neurologist who believes you instead of using one this “behavioral” crap. I’m glad that she(the old neuro) at least concedes that the ophthalmologist is correct and I do agree that a sleep study and another EEG may be a very good idea to further verify the diagnosis. Rose has very good advice. Be aware different locations have different laws and regulations regarding use of medical CBD for seizures.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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