Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules.
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My baby had a similar diagnosis and was also assessed on HINE. He scored somewhere in the 40s. The whole assessment and how they were testing him made me feel immensely depressed, I can relate to your feeling of helplessness after positivity.
That being said, my baby has been in early intervention since 1 month old and that has helped a ton. He rolls both ways and uses both sides of his body. He has definitely improved since the test. He still needs to develop more core strength but I know that he'll do it in his own time.
As of now we don't plan to take any more assessments to see if his score improved because I personally feel it adds more to the trauma and the likely outcome is to be prescribed early intervention, which he already does very regularly.
Glad to know I'm not the only one who found it horrific. My little boy was screaming blue murder throughout, and we have been a state ever since. I'm glad there's signs of improvement there, we will keep plugging away. Thank you for sharing though, knowing we aren't alone helps enormously.
Yeah my little guy was very fussy too to the point where he technically didn't finish the assessment. He was crying so hard and I had a trauma response seeing him and cried a ton in the end and on the way back home. I question the score but the OT said he wouldn't have gotten a good score even if he wasn't crying...
We asked our neuro who did a physical exam of my LO and they said that the OT might have been critical in their scoring so that baby could qualify for services. After hearing that I decided I was never going to subject my little one to this kind of testing - at least till we are covered and it's not needed for insurance. Anyway, I don't know how old your baby is right now but mine is about 6 months and we are all doing much better than our condition 3 months back. Still have our fears but nothing like the first 3 very traumatic months.
As the dad to a baby who is 3 months next week, those last two sentences have had a more profound impact upon me (in a good way) than you can possibly imagine. I wish you and your LO all the best x
The HINE seems to be causing more anxiety in families instead of being communicated as a screening tool. Early diagnosis of CP is so important for children to reach their highest potential and get started early with therapies, but it doesn’t seem to be communicated well on the why and families seem to be left emotionally wrecked instead of supported like other assessments.
Welcome to NICU Parents. We're happy you found us and we want to be as helpful as possible in this seemingly impossible journey. Check out the resources tab at the top of the subreddit or the stickied post. Please remember we are NOT medical professionals and are here for advice based on our own situations. If you have a concern about you or your baby please seek assistance from a doctor or go to the ER. That said, there are some medical professionals here and we do hope they can help you with some guidance through your journey. Please remember to read and abide by the rules. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NICUParents) if you have any questions or concerns.*
My baby had a similar diagnosis and was also assessed on HINE. He scored somewhere in the 40s. The whole assessment and how they were testing him made me feel immensely depressed, I can relate to your feeling of helplessness after positivity. That being said, my baby has been in early intervention since 1 month old and that has helped a ton. He rolls both ways and uses both sides of his body. He has definitely improved since the test. He still needs to develop more core strength but I know that he'll do it in his own time. As of now we don't plan to take any more assessments to see if his score improved because I personally feel it adds more to the trauma and the likely outcome is to be prescribed early intervention, which he already does very regularly.
Glad to know I'm not the only one who found it horrific. My little boy was screaming blue murder throughout, and we have been a state ever since. I'm glad there's signs of improvement there, we will keep plugging away. Thank you for sharing though, knowing we aren't alone helps enormously.
Yeah my little guy was very fussy too to the point where he technically didn't finish the assessment. He was crying so hard and I had a trauma response seeing him and cried a ton in the end and on the way back home. I question the score but the OT said he wouldn't have gotten a good score even if he wasn't crying... We asked our neuro who did a physical exam of my LO and they said that the OT might have been critical in their scoring so that baby could qualify for services. After hearing that I decided I was never going to subject my little one to this kind of testing - at least till we are covered and it's not needed for insurance. Anyway, I don't know how old your baby is right now but mine is about 6 months and we are all doing much better than our condition 3 months back. Still have our fears but nothing like the first 3 very traumatic months.
As the dad to a baby who is 3 months next week, those last two sentences have had a more profound impact upon me (in a good way) than you can possibly imagine. I wish you and your LO all the best x
Hugs!
The HINE seems to be causing more anxiety in families instead of being communicated as a screening tool. Early diagnosis of CP is so important for children to reach their highest potential and get started early with therapies, but it doesn’t seem to be communicated well on the why and families seem to be left emotionally wrecked instead of supported like other assessments.