Discussions By Condition: Infant conditions

Need Help with my 8 month old.

Posted In: Infant conditions 3 Replies
  • Posted By: Anonymous
  • August 27, 2008
  • 07:02 PM

OK I am going to start from the beginning. My son was born 1 week early due to extremely low Amniotic Fluid via C-section. He had Jaundice at birth and that cleared up under the lights and he was sent home after 5 days. He has snored and has been a "noisy" breather since birth. He had no suck reflex at birth either and feeding has always been a struggle for us. He was born 6.8 lbs and 18 inches long.

These are his diagnosed conditions:

Hypospadias

Larynogmalcia

Tracheomalcia

Sleep Apnea

GERD

Constant Stridor

Developmental Delay - he does not roll over from back to tummy and he is almost 8 months old. Only Gross Motor is delayed - other areas fine.

Milk Allergy

Vesicoureteral Reflux

Macrocephaly

Failure To Thrive

Constant Constipation

He also on August 6th had a Nissen - Fundoplication and G -tube insertion for his GERD and feeding issues. He gets his MIC-Key button on Sept. 2nd and his Hypospadias repair on Oct. 2nd.

He sees a Pediatrician, Urologist, a Cardio-Thoracic Surgeon, Physical Therapist, Developmental Specialist, Speech Therapist, and a Home Health Nurse.

He was growing just great until his 6 month well-baby checkup..It has now been a downward spiral. He lost a pound and a half and has failed to gain any weight since then. He has been the exact same weight for over 4 weeks. His feeding is controlled - so he is getting enough calories. He eats 4 ozs every 3 hours around the clock - 24/7. He is now 15.10 lbs and is 25 1/4 inches long.

I am at a lose. I am unsatisfied with his Pedi now because he claims all my son's problems are unrelated. How could all this problems be unrelated? How could one infant have so many "separate" birth defects and medical conditions? I am switching providers but with the insurance we are on it takes 45 days before we get in to see the new doctor. I just want someone else's views on my son's history. Am I being crazy? Or would you do the same? Anyone with any advice is welcome because I am tired of not knowing what is going on with my son.

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3 Replies:

  • With that many different birth defects the first thing that comes to my mind is chromosomal abnormalities, i'll do some research and let you know what i find out.
    qwertyuiop123 453 Replies
    • August 29, 2008
    • 03:56 PM
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  • It could be maternal upd 22, meaning he may have gotten both copies of chromosome 22 from you, instead of one from you and one from your husband, i'm having trouble finding information about it, because they want me to pay to view the case reports, but i'll post more as i find it.
    qwertyuiop123 453 Replies
    • August 29, 2008
    • 07:22 PM
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  • have you taken him to a childrens hospital like st.jude's, vanderbuilt, riley's? the only thing i can think of off the top of my head is CP(cerebral palsey), without knowing all the symptoms it's hard to tell. if you don't mind me asking, what tests have they done & what formula/feeding does he get? even if he's eating every 3 hours, the calories might need to be adjusted since he's not seeing the effects of it. 1800 cal. a day is considered starvation, if you total it up & it is under/the same/or barely above 1800 then i would slowly introduce a new food suppliment(givehis stomach time to adhust), to boost caloric intake. if you could send me an email with the symptoms, i can possbly be alot more helpful. God be with you.
    jeep4x4girl 2 Replies
    • September 10, 2008
    • 03:31 AM
    • 0
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