Page 2 of 7 FirstFirst 1234567 LastLast
Results 11 to 20 of 65

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

  1. #11
    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
    With his macrocephaly he's 20.9 inches( 53 cm iirc) head circumference at 17 months, which puts his head size around his 11 year old brothers. No idea if his thalamus is enlarged but I'll check into it. It's very possible his head size is causing problems but in my mind at least there is an equal chance of it being something else and they are too focused on his macrocephaly, especially given his last MRI.
    It took awhile to find the name but the other condition I thought your son many have is Dopa responsive dystonia. Dopa responsive dystonia is often mistaken for Cerebral Palsy as you can see in this documentary https://www.youtube.com/watch?v=8YyGrN_evYI (this documentary called Cerebral Palsy a disease which it is NOT btw) Your son obviously has Macrocephaly because his head seems very large, but he could have Cerebral Palsy or Dopa responsive dystonia in addition to other neurologic issues from the Macrocephaly. Ask about Dopa responsive dystonia. I noticed your MRI said HIE which I googled. Hypoxic ischemic encephalopathy apparently means that your son had reduced blood flow to his brain at some point so I’m sure that factors into his symptoms. Ischemic means lack of blood flow…A friend of mine had an ischemic injury to his thalamus and it effected his sensation, and sense of balance, and proprioception. The thalamus may factor into Cerebral Palsy, Autism and ADHD as well. Your first Neuro sounds really lazy to me. So glad you have a 2nd opinion.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  2. The following user says "thanks"


  3. #12

    Default

    His ENT ordered a sleep study of all things, which caught me off guard( had his adenoid scraped in August). This was after seeing the seizure event video we had.

  4. The following user says "thanks"


  5. #13

    Default

    Forgot to post the vid I keep talking about

    https://share.icloud.com/photos/0tt0...KO289I6EV_6aJA

    This is what we assume is a seizure or seizure like event. Out of all the doctors and therapist we shown this too the only one not concerned is our neurologist.

  6. The following 3 users say "thanks"


  7. #14
    Distinguished Community Member agate's Avatar
    Join Date
    Oct 2006
    Location
    USA
    Posts
    9,501
    Blog Entries
    52

    Default

    Hi Lostparent, and welcome!

    I'm really out of my depth here as I usually just deal with MS but I do hope you can find some satisfactory answers for your questions. The advice from Rose (Earth Mother 2 Angels) seems very appropriate.

    If you're concerned about your child's speech, my 18-month-old grandson isn't talking much either, except for "uh-oh." I'm not concerned about it because I remember one of my brothers who didn't say a word until he was 3 years old. Then he came out with a sentence.

    Apparently he just hadn't had anything to say until then and saw no point in talking until he had something to say. He lived into his 80s and was probably the smartest member of the family.

    The MRI report for your son mentions "mild" HIE--that word "mild" is worth hanging onto, I think.

    The video shows a dear little lad, very responsive and smiling. I'll be hoping for the very best for him.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

  8. The following 2 users say "thanks"


  9. #15
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,444
    Blog Entries
    1

    Default

    ((((((Lostparent)))))) ~

    I apologize for not posting again sooner. Funnylegs4 is giving you excellent guidance. You're in good hands with funnylegs4.

    I watched the video of your son several times. As you may note in my signature, both of my sons had seizures, a variety of types, and my youngest son, Michael, had intractable seizures for 22 years. So, I have witnessed thousands of seizures in nearly 50 years.

    Based upon my experience, I think that it is highly likely that your son seized during that video. How he came out of that episode, alert and aware, may tell a lot about the kind of seizure and its foci.

    Surely, your son has had EEGs. Have they shown any seizure activity?

    A sleep study is an excellent idea. Seizures are quite often associated with sleep, either from being sleep deprived, or from over sleeping, or upon awakening or trying to fall asleep. It's common. Sleep was definitely a factor in seizure activity for both of my sons.

    A sleep study may also show whether your son has sleep apnea. How much oxygen is getting to your son's brain, when he sleeps? That's a good question to ask, and a sleep study might determine that. Particularly if a pulse oximeter is used during the study to track respirations, SATS (saturation of O2 in blood) and pulse/heart rate.

    A pulse oximeter is a very valuable thing to have, and they don't have to cost a fortune. Most pharmacies/drug stores have them, even to use on the finger. You'll want a pediatric pulse ox. Having a pulse ox will allow you to check his SATS and heart rate, if he has another episode like the one in the video. And just to check throughout each day/nite, like while he's sleeping. You can keep a chart of the readings including time of day, what he was doing at the time you took the reading, his condition at the time, etc. That could be helpful information to his physicians.

    Finally, I just have to say that your little boy is absolutely adorable. He is a precious angel. Beautiful smile. Please give him a kiss from Mama Rose.

    You and your son and family are in my prayers. Please keep us updated.

    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.

  10. The following 2 users say "thanks"


  11. #16
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    4,444
    Blog Entries
    1

    Default

    ((((((Lostparent)))))) ~

    One other note, I forgot. I noticed Evan is wearing an Ohio State t-shirt. If you are near The Ohio State University, I highly recommend that you contact Nisonger Center:

    https://nisonger.osu.edu/

    Nisonger Center was a new facility, when we arrived in the 1970s. Jonathan and Michael received superior care, diagnostic testing, therapy, dental care, all under one roof. It was a life-saver for our boys and our family.

    Ohio State is also widely renowned for its medical school, university hospital, and research.

    If it's possible for you to take Evan there, I truly recommend exploring Nisonger Center as an option. At least look at their website and consider calling for more information.

    GO BUCKS!

    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.

  12. The following user says "thanks"


  13. #17

    Default

    No worries on the late reply.

    He has had 2 previous 30 min EEG before the event in the video took place, last one was in May iirc. He has another 30 minute EEG scheduled this upcoming Monday.

    All the doctors he see’s, the ones my wife works with( she’s a gastro nurse), his various therapist all think he’s either having seizures or something else is not right. The only one who does not think it’s an issue is his Neurologist.

    So we are waiting on Monday, then go from there. After that is a very busy day in Nov where I have to convince my wife not to strangle the aforementioned neurologist lol, then see an ophthalmologist, then genetics all in the same day. Then the week after that we go to Cincinnati children’s for the 2nd opinion.

    We are still waiting on the sleep study to be scheduled but looks like it will be Dec. Trying to get an OT evaluation is driving me insane as well.

    Busy times to say the least.

  14. The following 3 users say "thanks"


  15. #18

    Default

    Forgot to mention first 2 EEG’s showed no abnormalities.

  16. The following 3 users say "thanks"


  17. #19
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,761
    Blog Entries
    31

    Default

    Hi,

    Rose is exactly right about the sleep study. Make sure your son has a sleep study! Has he ever had an EKG or heart ultrasound(in addition to EEG) to determine if the brain is getting enough oxygen from the heart? I fainted once and was checked for irregular heartbeats that could cut off blood to the brain, my results were normal but it might be worth checking. I was told the heart should be checked if neurologic problems are present if possible. Another EEG and ophthalmologist visit are good ideas!

    I don’t know anything about seizures but I knew a couple of people with epilepsy including a woman who got epilepsy after surviving a meningioma who described seizure symptoms to me. It looks like a seizure or some kind of usual brain episode. His brain signals are misfiring is some way. My friend who had the ischemic injury to his thalamus had some unusual eye movements as well(eye twitches and nystagmus) as part of his condition, particularly if he felt dizzy(perhaps your son is dizzy too?) but he never had seizures. I’m told the eyes are a huge part of determining if someone has neurologic impairment so I’m ALARMED that your neurologist is not concerned! Bad neurologist! My eyes also move somewhat abnormally(strabismus and nystagmus) because of Cerebral Palsy. I was a late talker. The forum has an epilepsy section here http://www.braintalkcommunities.org/...hp/59-Epilepsy that may help. Here’s some other blogs about people with seizures that may help https://www.lovethatmax.com/2008/12/...-seizures.html
    https://www.lovethatmax.com/2015/05/...are-devil.html
    http://elenadoodle.blogspot.com/2018...017-recap.html
    http://elenadoodle.blogspot.com/2018...ts-august.html

    Your son is PRECIOUS! He obviously understands you at the end of the video, so my guess is his cognitive functions are good when he’s not in the mist of an episode, but he has problems with motor areas. Just a guess.
    Last edited by funnylegs4; 10-09-2019 at 07:43 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

  18. The following 2 users say "thanks"


  19. #20

    Default

    He was diagnosed with a heart murmur at birth, but we've been told that it corrected itself, I don't think he's had an EKG since then unless he had one while under anesthesia during his MRI or adenectomy.

    Thanks for the links. When I get some time later today will look into them.

    I think our 2 biggest concerns now are

    What if this EEG on Monday still shows as normal.
    What do we do if the 2nd opinion is the same as the first?

    Very frustrating to say the least.

  20. The following 2 users say "thanks"


Page 2 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.