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Thread: My "into" to this section/Feeding Issues

  1. Old Newbie
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    #1

    My "into" to this section/Feeding Issues

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    Hey everyone. I'm just introducing myself and hoping to connect with other moms.

    My son was sent to the NICU at the childrens hospital at 2 days old for seizures. Turns out, he had a stroke in-utero. Very scary stuff. His MRI showed significant damage and I was basically terrified.

    He is 15 months old now. No developmental delays as far as we can tell. But he does have very very bad feeding and sensory issues. He only eats a handful of items, and typically only eats breakfast. Food seems to be a MAJOR source of fear and anxiety for him. And I am very stressed out. His PCM seems to think it's a phase (it's not), and we are not eligible for EDIS anymore. He sees his neuro this week so I'm hoping she will set us up with the feeding clinic.

    I guess I just needed to vent because all of my friends try to be kind and offer advice but the truth is he isn't going through a phase and nobody seems to understand because he doesn't have a "real" disability.
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    #2
    My daughter, who is now 12, sounds a lot like your son when she was born. She was born 6 weeks early. When she was 3 days old, she had some minor seizures (no strokes like your son). She also had issues with food & didn't really start eating food consistently until she was about 14 months old. She also had issues with clothes, new people, changes, etc. She was diagnosed with S.I.D when she was about 2, if I remember correctly. She was speech delayed as well. She did receive some services including occupational & speech therapies, etc. I am very thankful to say that she did outgrow all of her issues!

    I will be praying for you guys! Wishing you well at the neuro appt!
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  3. Old Newbie
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    #3
    Did your daughter have to have her seizures controlled by medication? Has she had any since? My son has been weaned from his medication for awhile now and I'm always paranoid he will get more.

    How long did your daughter receive therapies for?
  4. Breathe and chill
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    #4
    Are you involved in early intervention? If not, I would recommend trying to get in touch with them and find out if any of them are trained in the SOS Toomey approach to feeding. The OT/Speech therapists should be able to help as well, even if they aren't trained in that particular program.

    It's a method to help kids become a little more "desensitized" to eating and provide tips to help them learn to eat a wider variety of foods. The program/idea FOCUSES on sensory issues and feeding. Don't listen to your doctor; listen to your gut. It's not always a phase and you know your son best
    Put on your big girl panties and deal with it like a boss.

  5. MilitarySOS Jewel
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    #5
    I don't have any advice, I just wanted to give you that his neuro can help.
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    #6
    I am an early intervention provider and Mommy to a daughter who also had a stroke in utero. My daughter is nine now and still takes 3 medications daily to control her seizures. I am happy to report that she has outgrown some of her other challenges. Her occupational therapist and her speech therapist were instrumental in working through her early feeding issues. Feel free to PM me.
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    #7
    Quote Originally Posted by ChiefsGirl View Post
    I am an early intervention provider and Mommy to a daughter who also had a stroke in utero. My daughter is nine now and still takes 3 medications daily to control her seizures. I am happy to report that she has outgrown some of her other challenges. Her occupational therapist and her speech therapist were instrumental in working through her early feeding issues. Feel free to PM me.
    I'm a developmental specialist for EI
    Put on your big girl panties and deal with it like a boss.

  8. Regular Member
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    #8

    Hello

    I remember reading at some point that you worked with young children but didn't realize you worked in EI. I am a pediatric audiologist and work as the coordinator of a program for children with hearing loss. Love it!
  9. Old Newbie
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    #9
    Wow so many professionals! How wonderful! I'll see what the neuro says tomorrow and give an update on what they want to do. I just want him to eat =/

    And other moms who have children that have had strokes, amazing. I never realized how "common" it was. I didn't even know unborn babies/kids could have strokes until 15 months ago
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    #10
    DS#3 (now 3 yrs) doesn't have neuro problem, he was born with a mild pulmonary stenosis which has been down graded now, and did have growth issues when he was little (he was in the negative % for the longest time, did every test possible and found nothing). He did have major sensory issues, he would only eat things that were creamy (yoghurt, bananas, pudding, etc), if it was grainy he would gag. He also HATED water, he would scream like you wouldn't believe if you tried to bath him or wash his hands. He was a little over 18mths before we could bath him without him screaming. He is growing now, but still prefers the creamy foods and is a very picky eater. He doesn't eat meals, he prefers to snack, even if I try and hold his snacks, a bite and that's it.


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