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  1. Was recommended that I post this here( deep seizures)

    My son is 2 years old. Diagnosed with mild HIE at birth. Since then he has been diagnosed with both hyper/hypotonia, gross motor delay, macrocephaly ( 53cm/20.9 inched at 17 months, speech delay,...
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    Thanks for the replies, Earth mother this is...

    Thanks for the replies,

    Earth mother this is the new neurologist. She thinks itís either deep Seizures that canít be picked up by EEG or stereotypies.

    Itís also still further complicated due to...
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    Deep Seizures?

    Is there a good resource to learn more about deep Seizures? Our sons ( 2 years old) neurologist has brought it up as a possibility after a problem with him tilting his head briefly has resurfaced. He...
  4. Not having any issues with social distancing....

    Not having any issues with social distancing. Work I primarily stay in the stockroom which means I donít see a lot of people.

    Just very frustrating having to do telemedicine for therapy and...
  5. I hope this finds everyone well and Covid free. ...

    I hope this finds everyone well and Covid free.

    Our neurologist believes his head tilting issue may be seizures and wants to order another MRI( 3rd one).

    I do have a question seeing it wonít...
  6. @funnylegs4 Thank you for the response the 3...

    @funnylegs4

    Thank you for the response the 3 opinions we have from various doctors, therapists, etc

    Are

    Difficulty swallowing ( although this is rare while eating)

    Light gazing( although...
  7. Not seizure related( that I can tell ) but any...

    Not seizure related( that I can tell ) but any thoughts on this video?

    Iíve shown his speech, occupational, and physical therapist. Also the vision therapist with county services seen it as well...
  8. Old neuro sent us another message saying the EEG...

    Old neuro sent us another message saying the EEG results are completely normal without offering further explanation for the this is an abnormal test.

    I feel so ď relievedĒ
  9. I will say I found her answer confusing, I...

    I will say I found her answer confusing, I honestly donít think she understood the question or is willing to accept an abnormal result.
  10. Well the boys are driving me nuts, but I would be...

    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...
  11. View Post

    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...
  12. Well we finally got a response from his first...

    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...
  13. View Post

    Sorry Iíve 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
  14. Got our 2nd opinion, she watched that vid at...

    Got our 2nd opinion, she watched that vid at least a dozen times, showed several other neurologist ( including the one who trained the neurologist weíve been seeing).

    They all agree that it was a...
  15. View Post

    No worries Donna, Iím in the states( Ohio )
  16. Not related to his seizures but to his CVI. ...

    Not related to his seizures but to his CVI.

    Low vision services finally got ahold of us to schedule his low vision assessment. The earliest appointment is in February. For the emphasis on quick...
  17. Had the appointments yesterday, ( sorry did not...

    Had the appointments yesterday, ( sorry did not post 3 Dr visits and 1 therapy was too tired lol).

    His Neuro he had been seeing was still a waste of time, forgot the term she used but it's almost...
  18. Been a few days, we see our current neuro next...

    Been a few days, we see our current neuro next week for what may be our last appointment with her, at least before our 2nd opinion on the 15th.

    I asked her if these are indeed behavior related and...
  19. Dumb question time, should I mention to our...

    Dumb question time, should I mention to our current neuro that we are getting a 2nd opinion?

    Iíve never thought about it but it kinda popped in my head this morning.
  20. Thank you for posting the link however I did...

    Thank you for posting the link however I did reference that when I asked my neurologist.

    She has seen the video and out of all his doctors ( pediatrician, genetics, ENT, the several my wife works...
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    Ugh canít wait to talk to the other neurologist on the 15th. Hopefully we get more insight.

    I asked our neuro about the inaccuracy of EEGís ( 1 of 2 are not detected) this was her response.


    ...
  22. For his age I'm was very confused when she stated...

    For his age I'm was very confused when she stated behavior related. My response was according to the epilepsy foundation amongst other sources 1 of 2 patients with epilepsy don't show abnormalities...
  23. Neuro just emailed us about the results and says...

    Neuro just emailed us about the results and says they are normal and it is likely behavior related and not related to any other issues. Also will not refer us to OSU developmental center.

    Very...
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    Thanks everyone as always.

    Iím calling his neuro again today to have that removed. As far as the developmental center, I need a referral before insurance covers it, which Iím hoping the...
  25. We have argued with them before over the MR/DD...

    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...
  26. View Post

    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...
  27. Having read some information on the epilepsy...

    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...
  28. Thanks rose. I know we tried going with OSU...

    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...
  29. He was diagnosed with a heart murmur at birth,...

    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...
  30. View Post

    Forgot to mention first 2 EEGís showed no abnormalities.
  31. No worries on the late reply. He has had 2...

    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.
    ...
  32. Forgot to post the vid I keep talking about ...

    Forgot to post the vid I keep talking about

    https://share.icloud.com/photos/0tt0H72jMlPKO289I6EV_6aJA

    This is what we assume is a seizure or seizure like event. Out of all the doctors and...
  33. His ENT ordered a sleep study of all things,...

    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.
  34. With his macrocephaly he's 20.9 inches( 53 cm...

    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...
  35. We originally were concerned CP, and will bring...

    We originally were concerned CP, and will bring it up when we get our second opinion next month. His neuro that he has now seems to be fixated on his macrocephaly for his development delays and...
  36. Thank you for the reply. One of our first...

    Thank you for the reply. One of our first concerns was/is CP. Unfortunately our neurologist is pretty dead set against anything we suggest thatís not macrocephaly or genetics related.

    We are...
  37. Doctors response to my questions. Next up after...

    Doctors response to my questions. Next up after this is another EEG( had another seizure like episode yesterday)

    1. Myelination (where the white matter is becoming insulated), seems to be normal...
  38. Thank you for your Welcome and reply Earth...

    Thank you for your Welcome and reply Earth Mother/Rose

    It is frustrating, especially seeing that he can't talk yet so it's really difficult to know what's going on that he can't tell us.

    These...
  39. Lost parent looking for advice/what should we be asking neuro

    Good morning.

    New parent/member here, heads up this is a bit long ( sorry in advance).

    My son is 17 months old. Diagnosed with mild HIE at birth. Since then he has been diagnosed with both...
  40. Thread: Hello

    by Lostparent
    Replies
    0
    Views
    814

    Hello

    Hi, just a lost parent looking for some insight/advice on what I should be asking our sons neurologist.
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