23 September 2011

reflux

So, with the Baby Game along with the highs, come the lows. At 10 weeks old Mya was diagnosed with GERD (Gastroesophageal reflux disease) Here is her story...

Mya wasnt right from day one. I stayed in hospital for 5 days after the birth with what I thought at the time was a problem with her latching on to breastfeed (later I learned she latched on fine but didnt stay on because of the pain of reflux). While I was in hospital my beautiful little newborn spent the whole time awake and screaming. She was taken away from me on the 3rd night by the midwives because I was physically exhausted and needed sleep (ironically I couldn't sleep anyway while listening to my baby screaming at the other end of the ward). being a first time mum looking at other mums peaceful sleeping babies I was convinced I was a bad mother and doing something wrong.
When I came home I hoped desperately that we would settle quickly into a routine but Mya was not feeding well taking barely an ounce at a time of expressed breast milk and not staying long enough on the breast to feed properly. The only reason mya continued to stay a good weight was through constant feeding, pretty much every half hour. She would sleep for 5-10 minutes at a time, most of the time having to be constantly bounced in her bouncer chair. When she screamed it would last hours and nothing would calm her down. She would scream to the point of going purple and stop breathing. Her breathing was constantly husky and would grumble like she had a really bad chest infection and her tongue was yellow from the acid.
I went to the doctors over 8 times over the next couple of months explaining how I was really struggling and how mya was screaming for longer and longer periods every day. I was sent away each time with the same conclusion, 'colic'. It was even suggested that the issue was I was a young mother struggling with the demands of a baby!
I became very depressed and withdrawn. I didn't leave the house for days and even weeks because I couldn't bear anyone thinking I was a bad mother as I couldn't calm my screaming baby.
At 9 weeks old mya started screaming and didn't stop. After 6 hours I went to a&e. In tears and physically shaking I waited for a doctor to see me. People in the waiting room even tried to calm her down but she was hysterical and the screaming was endless. Through screams in the doctors office I finally was given the first vague diagnosis and mya was prescribed ranitidine and gaviscon.
After a week of being on the medication she was a different baby, I had my first real smiles and it seemed as though I had finally got to the bottom of it. Not long after that she outgrew her dosages and the screaming returned. It took over 6 phone calls and 3 visits to the doctors to demand to see a paediatrician. One week later I finally got to see a paediatrician. After 10 minutes of the paediatrician attempting himself to stop mya screaming he proceeded to prescribe her a higher dose of ranitidine, domperidone, gaviscon and nutramigen formula for a dairy intolerance.
Over the next couple of months we altered the dosages of the medications and she was even put on lansoprazole as well. From 10 weeks old until 5 and a half months old I adjusted to giving Mya 4 medications 5 times a day.
After half a year of Reflux controlling our lives, at 6 months old, I finally managed to take Mya off all 4 of the medications.
Those six months were the most demanding, stressful, emotional and draining of my life. No-one apart from those who go through it themselves know the stress and upset reflux causes. It is the worst thing in the world seeing your baby in pain and not being able to do anything to help.

Now, at 17 months old, Mya is thriving. She crawled at 5 months old, started cruising at 8 and was walking by 11! She is a beautiful, happy toddler with a wicked sense of humour and I feel so proud to call her my daughter. There is a light at the end of the reflux tunnel ...



2 comments:

  1. Hello! Yes people don't know unless they've been there! Just reading your story made me think of ours and the tears are welling up...I didn't realise it affected us that much. Ethan is Soya and Dairy intolerant too. We never got given ranitidine, my mum suggested we ask for it (She's a pharmacist) but the gp didnt want to know but i went back and another gp referred us to dietetics and that seems to help a lot. he still has wet burps and the occasional vomit but it is tons better now! x

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  2. Im glad he is getting better now. It is a very difficult and upsetting time. I just wish doctors took us mums seriously and didn't dismiss us so quickly x

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