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9 year old ongoing reflux

Posted , 5 users are following.

moolly
moolly

I will try and keep it as short as possible, my beautiful son has had reflux since birth. He would scream in agonising pain before and after a feed, as a first time mum 9 years ago I would feed constantly as I thought it was hunger after being sick it was like he was still hungry.

He was in pain alot. I had a health visitor around for a long while as I had PND as a result, on top of exisisting anxiety/depression. She would really try to push for help for him, she said herself its not right.

Numerous doctors appointments and even expressing (I breast fed) and adding medication into the bottles. Switching onto formula at 6 months old, adding medication, having a prescripted formula and specialist formulas for reflux never worked.

Then came food, every meal, even at 5 years old would end in sick coming up or the smell his breath, bless him. He was diagnosed with Autism but I honestly think this reflux affects him the most.

He became increasingly more fussy with his food between 2-4 years old and now has a very bland diet, being sick at the sight of wet food. I've had a dietcian come around to help and advise, but nothing worked and they didnt seem to quite understand the severity of his diet/reflux.

Unfortunetely hes never grown out of it and despite visits to the hospital specialist it was always dismissed as something he'd grow out of. Hes been aneamic in the past and had loose bowel issues as toddler, again just dismissed as nothing.

He turned 9 in October and had an appointment to see a specialist  just last week (very long awaited for by both us, mum and dad, the rest of the family and school) 

We did not see the specialist himself but a nurse I guess who takes our notes and discusses it with him after to see if he agrees/disagrees with what she thinks is correct.

Despite discussing eveything and more that I've written above, and him being sick in her sink numerous times whilst there she says its habitual, talks about coping mechinisms and a dietcian. ANOTHER different medication and a follow up in 3 months.

I'm angry. Hes sent home every other day from school, we're all frustrated, the school are frustrated, they even cannot influence in anyway so we've decided to arrange a diary that we can shove in these peoples faces.

Hes been on numerous different medications and we've even managed to get him to swallow tablets whole which was an achievement. Obviously the new medication has done absolutely F all, thats why I'm writing.

But with my sons see-through/grey teeth, low energy, a strong smell in his breath of vomit and potentionally damage to his esophagus we're

growing increasingly upset and frustrated.

Its gone on too long. 

Any advice whatsoever would be massively appreciated.

1 like, 4 replies

4 Replies

  • jared2121
    jared2121 moolly

    Posted

    has he had an endoscopy/baroum swallow done? maybe he was born wit a LES defect or hiatal hernia, so thats why he has constant gerd.... idk that sucks man, i wish ther was some kind of doctor like "House", uk the guy from that TV show that specializes in figuring out any unknown disease etc, because hes so smart, and could get to the bot of things like this... every doc prob jus says "IDK take this pill"

  • norma04599
    norma04599 moolly

    Posted

    Hello, would hightly recommend insisting on getting a referral to a Gastroenterologist - it could be a number of things - food allergies, the autoimmune disease Coeliac Disease, Explain the symptoms since birth to the doctor and he/se should do an endoscopy to help in the diagnosis.
  • Gillian1956
    Gillian1956 moolly

    Posted

    Hi fizzle do very sorry to read this night Mare my heart goes out to yo I get reflux and heart burn all the time and can't imagine what it's been like for a child I really think you should push for more investigation done have they scoped him yet or done Berium meal swollen to see if this is damaging his gullit or test to see if he's got intolerant issues other then try to do a good diary of what he reacts more to it's got to be hard but if he's been like this since birth and his mothers milk affected him in my opinion seems there's more going on then th medical profession realizes I eat a diet that's bland no fatty foods and no fizzy drinks no tomato chocolate chips spices foods not foods hard to digest and eat little and often I do hope you get yo the bottom of this dreadful problem good luck but go back and demand for more tests

  • ihavenonickname
    ihavenonickname moolly

    Posted

    Hi Fizzies

    I am so sorry that you young son has suffered his entire 9 years. My adult godson has autism.

    These are my suggestions:

    1. make an appointment with a pediatric gastroenterologist

    2. elevate the head of your son's bed 5-6 inches. This helps keep the reflux in the stomach

    3. no laying down less than 1.5 hours of ingesting food or beverage

    4. your son needs vitamins and minerals...perhaps he loves ice cream...make him protein shakes supplemented with fruit...put it all in the blender...freeze and scraps with an ice cream scoop...make it fun...let him turn it into a Sunday or banana split complete with whipped cream and topped with a cherry. Children will eat what they prepare, so engage him in the process. Just remember that you know this is very special ice cream. And teach him to make his own lunch for school

    5. Visit the dentist because while baby teeth fall out, you want his adult teeth to grow in strong. And purchase a battery operated toothbrush and children's toothpaste...he needs to brush three times per day including scrapping the tongue. This will reduce the bacteria which will reduce the odor.

    6. Autism makes a child vulnerable...be sure other children are not bullying him

    7. Note how well he is sleeping

    8. My godson achieves more if criticism is done with humor, if he is given a written list to follow (the fridge door is a great spot for posting),

    9. Learn what your son is good at...Kevin finds it difficult to speak but is an avid reader, he can not keep chores straight in his head, but can follow a list.

    11. Small amounts of everything taken frequently during the day.

    12. No bending over...this promotes reflux...no hanging up side down on a jungle gym...no trampoline jumping

    13. Promote exercise that keeps the torso upright...bicycling.. or a unicycle...hiking...fishing..playing the pipes

    14. Stop talking about his GERD difficulty, his autism challenges in front of him...hearing of these is depressing for your son just like it is for you

    15. Join an autism support group.

    Autism spectrum includes speech and communication...using the mouth is related to eating.

    This is all difficult and overwhelming, more so if you have more than one child. If you are unsatisified with a physician, consider changing physicians

    kind regards

    judith

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