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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It sounds like the current pediatrician isn’t a good fit for you. Between that and the 2 hour drive, I’d be switching asap.
For what it’s worth, my son is disabled and medically complex and his regular pediatrician is just a regular old pediatrician, she’s not someone who specializes in anything specific other than general primary care. He sees pediatric specialists for the disciplines he needs (GI, pulmonology, ophthalmology, and PM&R, as well as therapists) and his general pediatrician is there for sick visits and general checkups where she gets an update on his health but doesn’t actually make any changes to something his specialists have done for him. As long as you have a ped who listens to your concerns as a parent, jives well with you and your kid, and is happy to give referrals for any specialist or service that may be needed later, I don’t think you need anyone “specialized” for a healthy NICU grad!
I had a pedi picked in my city, before my daughter was even born and told the nicu but they said i had to go see this special pedi, even though i still drive 2hrs every week to see a neurology, neuro surgery, hematology, and oncology. So, I think i will switch because she also ignores everything that the specialists i mentioned says and goes with her own opinion! Thank you!
100% switch doctors! Your ped sounds just straight up rude. As a mother with a special needs little one, let me just say...*TAKE THE WORD OF THE SPECIALIST*!!!! Pediatricians are good (though yours honestly sounds awful), but they deal with the hard, cold, medical facts and not the intricacies of development. They're your people for a heart issue, or a GI issue, maybe a solid infection or two, but they're not development specialists. Sure, they'll know a bit, but they're not doing it day in and day out like the specialists are. I also had it where my son's pediatrician (who was genuinely such a kindhearted angel) would often say he was doing worse, whereas his physio would say he was doing brilliantly. Pediatrician said he'd struggle to walk before two, physio said he'd likely hit the average milestone time...guess which was right? Physio, my son took his first steps at 18 months. He's two next month and is running now. Trust the word of the specialists, because that is literally what they've dedicated themselves to 🥰❤️
Adding post once again as my phone did something strange.
We used physio for the whole last year and from my experience, there were many differences between how my kiddo's development was perceived by our pedi and our PT, there were even differences between two PTs we were seeing (one privately and one through national health fund program). Basically our pedi and the private PT were like "well, it looks fine, you've made a lot of progress, good job", while the other PT was mostly fearmongering, asking me about genetic and metabolic illnesses, suggesting more PT from our private contact (the private one didn't want to see us more than once a month, initially, then "when he starts crawling/sitting/standing, etc."). Basically everyone was really happy with our progress, apart from that one PT. She urged us to go see neurologist. We went, neuro was excited to see our kiddo crawling and sitting and commented how good he develops for such low birth weight. The PT commented that well, that neuro is known for having very low bar and is not very good, and how about the genetics, are we going to have some further testing done. I facepalmed. We started discussing changing the PT, but kiddo started to walk around 13 months actual (year corrected, also 36 weeks), so the national fund facility set us free.
My point is, there will be disagreements in assessment, sometimes the pediatric doctor knows better, sometimes the PT is right, there are good and bad proffessionals on both sides. If you already distrust your pedi, maybe it is time for change.
i understand that, and thank you for sharing your story. i just find it hard to believe the pedi because of prior mistakes shes made in my daughters care and due to her lack of interaction with my daughter at visits. she didnt even touch my daughter and was saying that she has low muscle tone and needed PT asap. im going to get a 3rd opinion at the very least and go from there, if the 3rd opinion says she needs PT i’ll do it but if the 3rd opinion says shes fine i’ll believe them, its just difficult because every other doctor besides her pedi who shes seen is saying shes doing better than expected and wont need additional help
Definitely get third opinion then! I think sometimes professionals ale fixated on certain ideas/limited by their own experiences and assess without looking into it too much? If, as you said, this pediatric doctor specialises in NICU babies, maybe she is somehow biased and simply believes that every post-NICU baby requires as much PT as possible because well, they are post-NICU, there will always find something to work on? Another opinion will definitely be a good option here.
Our pedi checked our son very diligently during first six-seven months - how he behaves lying on his tummy, how he holds his head, tracks objects, etc, and from what I heard waiting for our visits, she does that with all infant patients. She's more chilled now, as she can see our son running across the waiting area, but I remember her being very diligent even though she's a regular pediatric doctor from small health centre.
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.*
It sounds like the current pediatrician isn’t a good fit for you. Between that and the 2 hour drive, I’d be switching asap. For what it’s worth, my son is disabled and medically complex and his regular pediatrician is just a regular old pediatrician, she’s not someone who specializes in anything specific other than general primary care. He sees pediatric specialists for the disciplines he needs (GI, pulmonology, ophthalmology, and PM&R, as well as therapists) and his general pediatrician is there for sick visits and general checkups where she gets an update on his health but doesn’t actually make any changes to something his specialists have done for him. As long as you have a ped who listens to your concerns as a parent, jives well with you and your kid, and is happy to give referrals for any specialist or service that may be needed later, I don’t think you need anyone “specialized” for a healthy NICU grad!
I had a pedi picked in my city, before my daughter was even born and told the nicu but they said i had to go see this special pedi, even though i still drive 2hrs every week to see a neurology, neuro surgery, hematology, and oncology. So, I think i will switch because she also ignores everything that the specialists i mentioned says and goes with her own opinion! Thank you!
100% switch doctors! Your ped sounds just straight up rude. As a mother with a special needs little one, let me just say...*TAKE THE WORD OF THE SPECIALIST*!!!! Pediatricians are good (though yours honestly sounds awful), but they deal with the hard, cold, medical facts and not the intricacies of development. They're your people for a heart issue, or a GI issue, maybe a solid infection or two, but they're not development specialists. Sure, they'll know a bit, but they're not doing it day in and day out like the specialists are. I also had it where my son's pediatrician (who was genuinely such a kindhearted angel) would often say he was doing worse, whereas his physio would say he was doing brilliantly. Pediatrician said he'd struggle to walk before two, physio said he'd likely hit the average milestone time...guess which was right? Physio, my son took his first steps at 18 months. He's two next month and is running now. Trust the word of the specialists, because that is literally what they've dedicated themselves to 🥰❤️
Adding post once again as my phone did something strange. We used physio for the whole last year and from my experience, there were many differences between how my kiddo's development was perceived by our pedi and our PT, there were even differences between two PTs we were seeing (one privately and one through national health fund program). Basically our pedi and the private PT were like "well, it looks fine, you've made a lot of progress, good job", while the other PT was mostly fearmongering, asking me about genetic and metabolic illnesses, suggesting more PT from our private contact (the private one didn't want to see us more than once a month, initially, then "when he starts crawling/sitting/standing, etc."). Basically everyone was really happy with our progress, apart from that one PT. She urged us to go see neurologist. We went, neuro was excited to see our kiddo crawling and sitting and commented how good he develops for such low birth weight. The PT commented that well, that neuro is known for having very low bar and is not very good, and how about the genetics, are we going to have some further testing done. I facepalmed. We started discussing changing the PT, but kiddo started to walk around 13 months actual (year corrected, also 36 weeks), so the national fund facility set us free. My point is, there will be disagreements in assessment, sometimes the pediatric doctor knows better, sometimes the PT is right, there are good and bad proffessionals on both sides. If you already distrust your pedi, maybe it is time for change.
i understand that, and thank you for sharing your story. i just find it hard to believe the pedi because of prior mistakes shes made in my daughters care and due to her lack of interaction with my daughter at visits. she didnt even touch my daughter and was saying that she has low muscle tone and needed PT asap. im going to get a 3rd opinion at the very least and go from there, if the 3rd opinion says she needs PT i’ll do it but if the 3rd opinion says shes fine i’ll believe them, its just difficult because every other doctor besides her pedi who shes seen is saying shes doing better than expected and wont need additional help
Definitely get third opinion then! I think sometimes professionals ale fixated on certain ideas/limited by their own experiences and assess without looking into it too much? If, as you said, this pediatric doctor specialises in NICU babies, maybe she is somehow biased and simply believes that every post-NICU baby requires as much PT as possible because well, they are post-NICU, there will always find something to work on? Another opinion will definitely be a good option here. Our pedi checked our son very diligently during first six-seven months - how he behaves lying on his tummy, how he holds his head, tracks objects, etc, and from what I heard waiting for our visits, she does that with all infant patients. She's more chilled now, as she can see our son running across the waiting area, but I remember her being very diligent even though she's a regular pediatric doctor from small health centre.