Page 3 of 7 FirstFirst 1234567 LastLast
Results 21 to 30 of 65

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

  1. #21
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,446
    Blog Entries
    1

    Default

    ((((((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.

    https://www.mayoclinic.org/diseases-...t/drc-20350098

    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,



    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.

  2. The following user says "thanks"


  3. #22

    Default

    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.

  4. The following 2 users say "thanks"


  5. #23
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,761
    Blog Entries
    31

    Default

    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! http://cripvideoproductions.com/astrokeofendurance.php

  6. The following 3 users say "thanks"


  7. #24

    Default

    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.

  8. The following 3 users say "thanks"


  9. #25

    Default

    We are still waiting on results from Mondayís EEG, however on some of the papers work it says he is MR/DD -Moderate.

    He has never been officially diagnosed as MR/DD and we have brought this up before with the doctors office. They state that itís to inform technicians that he may be violent or aggressive and itís nothing to worry about.

    Has anyone else encountered this on paperwork?

  10. The following 4 users say "thanks"


  11. #26
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,446
    Blog Entries
    1

    Default

    ((((((Lostparent))))))

    First, never allow a label to be attached to your son for the sake of the systemís convenience. If your son does not have a diagnosis of DD, no one can just label him as having DD.

    My sonsí pediatrician referred us to a developmental center, where they were given developmental tests. They were in early childhood programs for therapy and education at one year of age. This was nearly 50 years ago. So, your son should be getting the same or better than mine did.

    Second, what a horrible misrepresentation of people with DD that they may be violent or aggressive! That is antiquated thinking by people, who know nothing about DD. We also donít use MR any longer, because it spawns the R Word.

    People, who are afraid and do not know what is happening to them, may be uncooperative regardless of their abilities.

    Say something to your doctor about the unacceptability of this categorization of your son. This is the beginning and labels follow you for a lifetime.

    Please ask for a referral for developmental testing. Nisonger would be ideal. And look for early Ed programs for your son.

    Let us know when the EEG results are in. Prayers for you on the way.

    Love and 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.

  12. The following 3 users say "thanks"


  13. #27
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,761
    Blog Entries
    31

    Default

    Quote Originally Posted by Lostparent View Post
    This quote is hidden because you are ignoring this member. Show Quote
    We are still waiting on results from Monday’s EEG, however on some of the papers work it says he is MR/DD -Moderate.

    He has never been officially diagnosed as MR/DD and we have brought this up before with the doctors office. They state that it’s to inform technicians that he may be violent or aggressive and it’s nothing to worry about.

    Has anyone else encountered this on paperwork?
    Hi,

    In regards to the EEG trust your instincts about what is too much for him when tests are ordered. In regard to DD, Cerebral Palsy and most neuro conditions that appear in babies and toddlers seem to be automatically labeled as “developmental disability” for categorizing purposes by doctors I.e I have a “developmental disability” on paper because I have Cerebral Palsy but I have no mental delay and never displayed aggression. I once had a job with kids who were considered Intellectually disabled and development disabled, and they were NOT violent. The kids would simply get very frustrated when they could not communicate what they wanted, and some had involuntary body movements, like I do, that could be mistaken for purposeful undesired movement. I’m not a doctor but my opinion judging from the video is that you son has physical delay like me, not mental delay. The doctors may be rushing to label your son with the wrong diagnosis because one thing docs hate is saying “I don’t know”. It’s more important for your son to have the RIGHT diagnosis rather than a fast one so if DD doesn’t fit what you think he has speak up. The doctors should NOT be assuming your son will be violent/aggressive! That is an extremely wrong and dangerous stereotype!!!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  14. The following 2 users say "thanks"


  15. #28
    Distinguished Community Member tic chick's Avatar
    Join Date
    Oct 2006
    Location
    Detroit, MI
    Posts
    773

    Default

    hi lostparent!

    what a precious little boy!

    i'm not a member of this forum, but i used to post a lot in the tourette syndrome forum. i have ts.

    when i posted in the ts forum, there were a lot of dual ts/epilepsy diagnoses. in your video, i noticed your little boy was holding a video game control. many parents said that their children had video game induced seizures, which could also be induced by watching tv or any kind of flickering on a computer screen. i think that some graphics here on the forum were removed because of this reason. i don't know if your son was playing a video game or just playing with the control at the beginning of the video. you can look up video game induced seizures if you're interested.

    i also agree with rose about labels. i hate labels. all they do is prejudice people who see the label and then expect your child to fit the label or not test beyond the label. if a child is diagnosed with a disease (disorder), the label is helpful as a diagnosis. i think children are all on a spectrum, exhibiting mild, moderate or severe symptoms of the disorder. to casually write something on a chart is lazy. i would ask to have it removed, also.

    i hope you get some answers to your questions...but even if you never know exactly what problem your child has, you still have a wonderful human being to love and help grow to their fullest capacity!

    thank you for sharing,
    jeannie
    Last edited by tic chick; 10-16-2019 at 04:26 PM.
    Here's to good women. May we know them. May we be them. May we raise them.
    "The world is a better place when you're barefoot." Mark
    "Don't go there unless you know the way back." TC
    "...there will be an answer. Let it be." Paul McCartney

  16. The following 4 users say "thanks"


  17. #29
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,761
    Blog Entries
    31

    Default

    Quote Originally Posted by tic chick View Post
    This quote is hidden because you are ignoring this member. Show Quote
    hi lostparent!

    what a precious little boy!

    i'm not a member of this forum, but i used to post a lot in the tourette syndrome forum. i have ts.

    when i posted in the ts forum, there were a lot of dual ts/epilepsy diagnoses. i noticed your little boy was holding a video game controller. many parents said that their children had video game induced seizures, which could also be induced by watching tv or any kind of flickering on a computer screen. i think that some graphics here on the forum were removed because of this reason. i don't know if your son was playing a video game or just playing with the control at the beginning of the video. you can look up video game induced seizures if you're interested.

    i also agree with rose about labels. i hate labels. all they do is prejudice people who see the label and then expect your child to fit the label or not test beyond the label. if a child is diagnosed with a disease (disorder), the label is helpful as a diagnosis, but again, children are all on a spectrum, exhibiting mild, moderate or severe symptoms of the disorder. to casually write something on a chart is lazy. i would ask to have it removed, also.

    i hope you get some answers to your questions...but even if you never know exactly what problem your child has, you still have a wonderful human being to love and help grow to their fullest capacity!

    thank you for sharing,
    jeannie
    Thanks! Great point! I forgot about photosensitive seizures and seizures induced by screens. That was a big issue with the movie "The Incredibles 2" when it came out because the movie uses flashing lights in the villain scenes and some people had bad seizures watching it.
    A lot of youtube videos have flashing that can induce seizures as well.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  18. The following 4 users say "thanks"


  19. #30

    Default

    We have argued with them before over the MR/DD label and every time they say they will remove it it never happens. Iíve told them heís not aggressive and that heís scared because of the unlikelihood of him understanding whatís going on around him.

    Iím not really sure what else we can do to have it removed.

    He has in his health record a gross motor delay and a ď language disorder involving understanding and expression of languageĒ neither in my mind warrants such a label.

    In the video he is holding a game controller but nothing was on( itís his brothers ) except regular tv. To my knowledge heís not had an event while his brother was playing a game. Although I know some TV programs can also cause issues.

  20. The following 4 users say "thanks"


Page 3 of 7 FirstFirst 1234567 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.