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Toddler with different diagnoses

Hi I have a 1 year old girl shes such a happy child however she has had it tough. We now have multiple diagnosises for her its hard work as constanly needs watching. Shes been diagnosed with a floppy larynx, cows milk protein allergy, dysphagia, oral hypersensitive, reflux, obstructive sleep apneoa, grade 2-3 tonsils and a pigeon chest, im on here to see if anyone elses child has got problems like these as I feel so alone especially with dysphagia as no children I know have it. Thanks


  • Hi honey, i didn't want to read and run. Is your daughter being seen a pediatrician cause these sound like a lot of worries you have to deal with? Really your GP should have surely referred you to a specialist at a hosp and explained what you can do going forwards? I'm so sorry you must all be suffering. 

  • Hiiii.... my daughter was diagnosed with the floppy larynx the same as your daughter and also the reflux too. I can honestly say that the first 4 months of my baby's life were probably the worst 4 months of my life and that sounds awful, I know. I had all of these expectations about how amazing it was to have a new baby and yes... it was incredible BUT seeing my tiny baby suffering so much and hearing doctor after doctor tell me I was being overprotective and giving me that patronising grin will haunt me forever. We were finally listened to around 3-4 months and to cut a long story short, she had  surgery at 6 months old. Her laryngomalacia  (floppy larynx) was considered life threatening and I thought she was miles better than she was at birth! Imagine how bad it was in those first few months. I don't tell you this to scare you.... 95% of cases will be grown out of. I tell you this to just show support.  I really really really feel your pain and with all of those other diagnoses, you must be wonder woman for keeping it together. For me, it was the terrifying holding of breath at night as well as the endless struggle to feed that just drained us all. I can't offer much help other than KEEP GOING BACK. They will get fed up of you eventually and refer you on and this is what got us the answers we needed. Massive hugs and feel free to message me if you want any help with the floppy larynx. Can't help with the other things... how heartbreaking xxxxxx

  • Yes shes under a pediatrician, speech and language, ENT. Shes one thick and easy, renitidine and eats her food all chopped up very small. I just wanted someone to speak to whose child maybe has swallowing problens as I feel so alone.

    She was born with hyperthermia so was on a heated mat for the first 24 hours, we then got discharged when she was 2 days old only to get rushed back in 6hrs later as she went blue around the lips, her temp had dropped again she was on ivs for a week, 2 lumbar punctures and countless canulars/attemps, they treated her for septicaemia/meningitis and said she had hyperthermia again. 

    2 months old she was diagnosed with the reflux. She spilt loads of her feeds, breathing was horrendous so at 4 months old she was seen by ent and was diagnosed with the floppy larynx and scheduled for surgery however the consultant said she didnt think it would be beneficial at the time. 6 months old she went to get her tongue tie done as she was still struggling to feed. Then seen by SLT to be told she had swallowing cordination problems and was put on thickener. 1 yrs old she was diagnosed with a CMPA allergy and also had a videofluroscopy to show signs of penetration when she was drinking slightly thicken fluids. She was also struggling with food for her age and was diagnosed with the oral hypersensitivity so we have to cut her food so small for her to manage it, she hardly eats at times because she slowly becoming mind blocked because of the continuous borking and choking.

    I had to fight for all this with the help of my hv as she was the only one that knew something wasnt right with my daughter. We are due to see ent again in may due to her also having enlarged tonsils and sleep apneoa.

    Its hard but I get through it she such a laid back girl despite all ger problems. 

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