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Mild HIE and cerebral palsy

KSchallKSchall Posts: 5Member Listener
edited July 2018 in Cerebral palsy
My son( 2 months old) was diagnosed with mild HIE( Hypoxic Ischemic Encephalopathy) at birth. I know it's a real young age to be worried about CP, but he had a rough birth( C-section, 16 pop offs. 4 docs had to push him out). Initial Apgar of 3 and needed bagged. Cord Blood PH  6.9. The only test ordered was a cranial ultrasound with no signs of bleeding.

He is currently having tone issues with holding his head ( tends to flop to the right) and seems to favor his left side over his right. With tummy time he rarely pushes himself up with his arms unless he's really upset.

We had a panel a couple days ago with OT, SP, a neo natal development specialist. There has been no MRI or EEG or CT which with discussion in the  HIE related groups both should of been done after birth. Literraly everyone is telling us this should of been done. We see a different Neo Natal development specialist at the end of July.

So far our docs keep saying to monitor progress, but I'm at a real loss as to why these test were not done. When we see the new neo natal dev doc next month( July 30th) should we be pushing for the MRI etc to be done, or are we just being overly paranoid. Not sure it matters but we are in the states. Thoughts/opinions are appreciated.

Replies

  • Richard_ScopeRichard_Scope Posts: 1,144Member, Administrator Scope community team
    Hi @KSchall ;
    Welcome to our community and thanks for your post. From what I understand an MRI or CT should have been performed. However, I must add that signs of brain injury may not appear until later.
    I would ask the question of the new neonatal development doctor on 30th of July. 


    Stay in touch.
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KSchallKSchall Posts: 5Member Listener
    Hi @KSchall ;
    Welcome to our community and thanks for your post. From what I understand an MRI or CT should have been performed. However, I must add that signs of brain injury may not appear until later.
    I would ask the question of the new neonatal development doctor on 30th of July. 


    Stay in touch.
    Thanks for your response, hard doing the wait and see approach. In the meantime we have been doing more exercises with him and ROM. His big brother has been really good playing with him as well. Hopefully it helps
  • KSchallKSchall Posts: 5Member Listener
    Just a quick update. He started PT( once a week) for hypotonia and we have a MRI scheduled for the 6th.

    Our Neuro seemed confused and upset that an MRI was not done at birth.hopefully we get some more answers
  • Richard_ScopeRichard_Scope Posts: 1,144Member, Administrator Scope community team
    Hi @KSchall ;
    Great to speak with you again! The physiotherapy should help and it's great that his big brother is playing with as well. This will also be very beneficial. Keep me updated. :)
    Scope
    Specialist Information Officer - Cerebral Palsy
  • KSchallKSchall Posts: 5Member Listener
    Been awhile, but we are back to what feels like square 1.

    Just seen neuro today( same doc)  and we brought about the possibility of mild CP again. She hem hawed a bit and said she does not want to call it CP due to lack of brain injury, but his record states that he has mild brain damage from lack of oxygen at birth. So I'm more lost than before. 

    He's 9 months old now, tends to drag his right foot occasionally while we assist with walking, and is developmentally behind about 2 months physically. The MRI that was done back in Sept did not show anything beyond a mild myelination delay.

    We go for PT evaluation tommorow, but OT veal was today with neuro visit so I don't expect much of a change. Also has issues with acid reflux that we can't figure out the cause of.

    Not sure where to go from here, 2nd opinion is hard to get because everyone refers to the same hospital system.
  • Richard_ScopeRichard_Scope Posts: 1,144Member, Administrator Scope community team
    edited February 8
    Quite often medical professionals can be reluctant to give a definitive diagnosis. Brain injury associated with CP is not always visible on an MRI and is not normally the only method of confirming a diagnosis for that reason. I would definitely look at a second opinion.
    How did the PT evaluation go? In terms of the acid reflux, there is a higher prevalence of gastroesophageal reflux (GER) in children with CP. This is the involuntary passage of the gastric contents into the oesophagus.


    Scope
    Specialist Information Officer - Cerebral Palsy
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