Page 7 of 8 FirstFirst ... 2345678 LastLast
Results 61 to 70 of 80

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

  1. #61
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,864
    Blog Entries
    32

    Default

    Quote Originally Posted by Lostparent View Post
    This quote is hidden because you are ignoring this member. Show Quote
    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

  2. The following 3 users say "thanks"


  3. #62
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,803
    Blog Entries
    1

    Default

    ((((((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, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  4. The following 2 users say "thanks"


  5. #63

    Default

    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.

  6. The following 4 users say "thanks"


  7. #64
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,803
    Blog Entries
    1

    Default

    ((((((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, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  8. The following 3 users say "thanks"


  9. #65
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,864
    Blog Entries
    32

    Default

    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

  10. The following user says "thanks"


  11. #66

    Default

    I hope this post find everyone well, I know Iíve not been around lately. The boys have been keeping us busy😅.

    Good news is since starting the keppra Evan has only had one seizure.

    He has an extended EEG last week and one thing that confused us is the interpretation. It states

    ď The impression is that ď this is an abnormal long term video EEG for age. No epileptiform activity is present.

    What Iím confused on are the results abnormal or the fact that the test is being done abnormal? ď

    We donít see neuro in until May but I did message them asking for clarification. Anyone have any thoughts?

    Regards,

  12. The following 3 users say "thanks"


  13. #67
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,864
    Blog Entries
    32

    Default

    Quote Originally Posted by Lostparent View Post
    This quote is hidden because you are ignoring this member. Show Quote
    I hope this post find everyone well, I know I’ve not been around lately. The boys have been keeping us busy��.

    Good news is since starting the keppra Evan has only had one seizure.

    He has an extended EEG last week and one thing that confused us is the interpretation. It states

    “ The impression is that “ this is an abnormal long term video EEG for age. No epileptiform activity is present.

    What I’m confused on are the results abnormal or the fact that the test is being done abnormal? “

    We don’t see neuro in until May but I did message them asking for clarification. Anyone have any thoughts?

    Regards,
    Hi Lost Parent,

    How are you? How are the boys? I’m glad he’s only had one seizure, that seems like a big improvement! The wording of that is extremely confusing. It would seem to me that they mean his brain activity is abnormal but not consistent with epilepsy. “epileptiform” means "associated with epilepsy" according to google. I could be completely wrong here. Keep us posted!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  14. The following user says "thanks"


  15. #68

    Default

    Well the boys are driving me nuts, but I would be worried if they didn't lol.

    The ( the old ) neurologist responded to my question which left us even more lost.

    " There were no abnormalities on the EEG study related specifically to the flashing lights.

    I am waiting to hear back from the official EEG reader who made the report for that study, but I believe the EEG impression should actually read "Normal" study not Abnormal. If there are abnormalities, they usually describe what those abnormalities are, and none were described that I can see."

    She was the one who ordered the test, so I thought I should ask her about the report. I'm just going to have to wait until the new neuro sees the results.

  16. The following 3 users say "thanks"


  17. #69
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,803
    Blog Entries
    1

    Default

    ((((((lostparent)))))) ~

    So good to see you posting again, and I'm pleased that Evan's seizures are being controlled by Keppra.

    There are many ways to interpret that EEG reading. One reading might be that it is unusual for a child Evan's age to have a long term video EEG. That doesn't make sense, because these tests are done on infants to adults.

    The lack of epileptiform activity just means that Evan wasn't seizing during the study.

    Your "old" neuro is as vague as the reading. You're wise to wait until you meet with your new neuro to get a definitive answer to this ambiguous reading.

    Meanwhile, may your boys drive you nuts everyday. Find the joy in everything. That's what parenting is about!

    Love & Light,



    Rose
    Mom to Jon, 49, and Michael, 32, 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. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  18. The following 2 users say "thanks"


  19. #70

    Default

    I will say I found her answer confusing, I honestly donít think she understood the question or is willing to accept an abnormal result.

  20. The following user says "thanks"


Page 7 of 8 FirstFirst ... 2345678 LastLast

Similar Threads

  1. Replies: 6
    Last Post: 07-29-2013, 08:26 PM
  2. I think Every Parent Here will Want to Read this
    By Donna Thomson in forum Child Neurology
    Replies: 4
    Last Post: 12-18-2012, 07:11 PM
  3. Replies: 9
    Last Post: 11-25-2012, 09:57 AM
  4. Sex and The Special Needs Parent
    By Donna Thomson in forum Child Neurology
    Replies: 5
    Last Post: 07-02-2012, 04:53 PM
  5. Parent's Suicide
    By britsbff in forum Anxiety Disorders (General)
    Replies: 4
    Last Post: 01-03-2012, 01:32 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.