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Mild HIE and cerebral palsy

KSchallKSchall Posts: 16Member Courageous
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: 1,547Administrator 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: 16Member Courageous
    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: 16Member Courageous
    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: 1,547Administrator 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: 16Member Courageous
    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: 1,547Administrator 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
  • Kate_ScopeKate_Scope Posts: 71Navigate Pioneering
    @KSchall Hello my name is Kate and I am a parent advisor for the navigate service. We are going live as of Monday,  we are offering parents one to one support over the telephone. We call you at a time that is convenient for you, we understand the demands of family life and of course, family life with a disabled child can be more time-consuming. 
    This service is for Parents who have a child recently diagnosed with an impairment or disability or on the pathway of diagnosis. We can offer emotional support and signposting for you the parent, a place where you can talk openly and honestly about how you feel without being judged. 
    I will post the links to the forms on Monday and the telephone numbers you may need if you feel this is the service for you. 

    I hope that the navigate service can support you with anything that you need. 

  • Kate_ScopeKate_Scope Posts: 71Navigate Pioneering
    edited February 25
  • KSchallKSchall Posts: 16Member Courageous
    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.


    His evaluation still showed delays, so I brought up CP again and was very quickly told they believe it's a genetic problem and are continuing to discount the possibility of CP. So we had new genetic test ordered, a organic acid that came back normal and a mucho polysaccharides that we are still waiting for results. Good news is he's started waving a couple weeks ago with his left hand primarily. He also started clapping this week but again he only moves his left arm to clap. We are waiting for next test results in 2 weeks and next eval and doc appointments in June/July before pushing for 2nd opinion.
  • Richard_ScopeRichard_Scope Posts: 1,547Administrator Scope community team
    Hi @KSchall ;
    Did they give the reasons why they believe the delays to be genetic? Does this mean that they have completely ruled out CP? @KSchall to help support you through this situation, I cannot recommend our Navigate Team highly enough. Alongside myself, we will support you through this.

    Scope
    Specialist Information Officer - Cerebral Palsy
  • Kate_ScopeKate_Scope Posts: 71Navigate Pioneering
    Hi @KSchall it seems you are really dealing with a lot at the moment. @Richard_Scope is correct that this is something we can support you with, we can offer emotional support and also practical support. 
    You don't have to have to have a diagnosis for your child just that you are on the pathways for diagnosis. 
    I will post the link for the webpage- we can just be that someone to talk to if that is what you need. 

    https://www.scope.org.uk/navigate

    Good luck with everything

    Kate 
  • KSchallKSchall Posts: 16Member Courageous
    Thanks again for the responses. Not sure if I can use the pathways as I'm in the states.

     It's frustrating because all the docs are not even considering CP and we got cleared by genetics so we are back square one.
  • Kate_ScopeKate_Scope Posts: 71Navigate Pioneering
    @KSchall how frustrating for you. I hope that there are some support services there that can help you. 

    good luck with everything and keep us updated 

    Kate 
  • KSchallKSchall Posts: 16Member Courageous
    Had a macrocephaly panel done and it came back clear. So square 1 again.

    He tends to tilt/rest his head to the right side for 5-10 seconds several times in a row.
    Been going on for about 6 months and has started to make him fall over while standing/walking.

    We see neuro again in Sept, we sent them a vid of this but they say it’s normal benign behavior so the frustration begins anew.
  • April2018momApril2018mom Posts: 1,198Member Pioneering
    KSchall said:
    Had a macrocephaly panel done and it came back clear. So square 1 again.

    He tends to tilt/rest his head to the right side for 5-10 seconds several times in a row.
    Been going on for about 6 months and has started to make him fall over while standing/walking.

    We see neuro again in Sept, we sent them a vid of this but they say it’s normal benign behavior so the frustration begins anew.
    Can you beg for a earlier appointment? When we were busy trying to figure out why my son was having several unwanted UTIs earlier this year, I had to literally advocate for him and act as a pushy mom. Until last month my son has had four or five UTIs.
    I emailed the hospital asking for a appointment immediately. Now we are getting answers. After many emails, tests and prayers, we know a bit more now. So I kind of understand your frustrations with doctors. I have been there myself.
    Who else can you see? It might help to make a list of symptoms or record a video. 
  • KSchallKSchall Posts: 16Member Courageous
    KSchall said:
    Had a macrocephaly panel done and it came back clear. So square 1 again.

    He tends to tilt/rest his head to the right side for 5-10 seconds several times in a row.
    Been going on for about 6 months and has started to make him fall over while standing/walking.

    We see neuro again in Sept, we sent them a vid of this but they say it’s normal benign behavior so the frustration begins anew.
    Can you beg for a earlier appointment? When we were busy trying to figure out why my son was having several unwanted UTIs earlier this year, I had to literally advocate for him and act as a pushy mom. Until last month my son has had four or five UTIs.
    I emailed the hospital asking for a appointment immediately. Now we are getting answers. After many emails, tests and prayers, we know a bit more now. So I kind of understand your frustrations with doctors. I have been there myself.
    Who else can you see? It might help to make a list of symptoms or record a video. 
    We did get 1 short video ( after months of trying)but because it was while he was eating the nurse who reviewed it said it was normal benign child behavior.

    As far as seeing someone else it’s real difficult between insurance coverage and who’s available. Everyone refers to children’s hospital in my area, and most of the doctors go along with what their colleagues say, after the sept appointment if we don’t agree with genetics and neuro we will find a way to seek a second opinion.
  • April2018momApril2018mom Posts: 1,198Member Pioneering
    Do you see NHS doctors or not? If NHS doctors are not doing their job do not be scared to switch specialists pronto. Often time there will be a department for that area of medicine like American hospitals. Email the head of the unit or department or call the hospital directly (you can find numbers on their website). Or you can try sending them a letter of complaint. Whenever I doubted the doctor I switched immediately. One urology doc (our first) refused to order tests or give me information. So I searched for another doc with good communication skills. 
  • KSchallKSchall Posts: 16Member Courageous
    Do you see NHS doctors or not? If NHS doctors are not doing their job do not be scared to switch specialists pronto. Often time there will be a department for that area of medicine like American hospitals. Email the head of the unit or department or call the hospital directly (you can find numbers on their website). Or you can try sending them a letter of complaint. Whenever I doubted the doctor I switched immediately. One urology doc (our first) refused to order tests or give me information. So I searched for another doc with good communication skills. 
    I’m actually in the states, did not realize this was a uk based site when I first joined. But I’m still finding a lot of information and support I don’t get from sites stateside.

    The problem is in my area, everything is referred to where we are going, and the doctors do consult a lot with each other which can be good, but makes switching troublesome at times.

    I have joined several HIE related support groups and posted the vid I showed the doctor’s office. Several people in those groups told me to bring up Cortical visual impairment, so messaged his doc and hope to hear back by midweek.
  • Richard_ScopeRichard_Scope Posts: 1,547Administrator Scope community team
    Hi @KSchall ;
    You probably have gone through this already but in my experiences supporting parents searching for a formal diagnosis, it's sometimes more productive to rule things out.

    Have your doctors tried that approach?
    Scope
    Specialist Information Officer - Cerebral Palsy
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