A couple of days ago you may remember that I posted about Evie’s eczema & reflux getting worse not better, and that I was considering starting her on Nutramigen feed to see how we get on. Now before I go any further, bear in mind that I have been to the Drs 6 times about this & phoned them 8 times as it stands currently.
So yesterday was our appt with the dr I have regularly seen, this time about Evie’s eczema. He’s now started talking to me as if I’m making it all up or thinking there’s more things wrong with her than there is. So he calls Evie’s name and as we get up I catch a glimpse of the “what’s she here for now” look he’s passing at me. So before we get sat down I’m already riled. He goes on to explain that a lot of children get eczema and it comes and goes blah blah and I talk about how the creams aren’t working. He asks me to show him so I pull her worst arm out. I couldn’t believe it. Nothing there! A tiny bit of redness that could be passed off as happening when I took her arm out. He grimaced and said “oh it’s Sod’s law, will always happen when you cone see us”. Then it clicked… I changed her formula to Nutramigen 2 days ago!! I explained what I had done and that Evie hadn’t refluxed at all that morning, and he said some children have cows milk intolerance some have an allergy but that most will grow out of it-brilliant news Doc but I’d already read about that! He then says “if the reflux and eczema etc keep settled down that’s great we’ve got to the bottom of it” wait WHAT?! I genuinely just heard “we”!!! So I’m now sat there wondering what miraculous part in Evie’s diagnosis he has played. None mr Dr! There’s no ‘we’ in this at all darling it’s more ME against the Drs! So I let it slide and mention how expensive the Nutramigen is & he still goes on about how some children are atopic and some just get eczema. I tell him that I want a prescription for the formula and he hands me one in promise that we re-assess in a month. Fine with me!
Fast forward to an hour later, when the Dr I saw last week organised the health visitor to come round to ‘support me at home’. Turns out she reported I had low mood! I never once mentioned anything and was laughing and joking in there….so I’m confused! So anyway the HV said “I had a detailed look through your dr notes before I came, as we always do before we see a new mum. I was confused by what the dr put about low mood as you’ve not once gone in about yourself, it’s always been Evie and her reflux/eczema/sneezing etc” so I said “I’m shocked she’s put low mood….” And explained how frustrated I was and that I had to put Evie on Nutramigen myself to see if it helped. She then looked like she’d seen a ghost and said “it’s funny you’ve done all that yourself….this form I have in my hand is a cows milk intolerance/allergy assessment sheet. After looking at your notes, seeing eczema and reflux that isn’t better with gaviscon pop up made me think intolerance immediately” so WHY OH WHY did the Dr not put two and two together but the health visitor can?! She praised me on my pro-activeness and how much I’ve fought for help and said that she has never known a mum who has gone off her own back to change her child to that formula. She didn’t even know you could buy it over the counter! She handed me the completed form and said that Drs like it when that’s been filled in so I’ll take that to my appointment in a months time.
Here’s a list of some of Evie’s symptoms
- Reflux (which is no better with gaviscon or carobel, or any upright position. We’ll get sick up no matter what and up to her next feed)
- Sneezing. Many times a day.
- Sounding like she has mucus at the back of her nose/mouth, as if she’s getting over a cold.
- Unsettled. She sleeps through the night but tends to toss n turn and can’t get comfy. She’ll only take 1 or 2 20 min naps in the day if that.
- Explosions when it finally happens. Ill say no more.
- Eczema which isn’t getting better with ointments.
- She has to suck on everything and could only get to sleep with a dummy since she was a newborn.
I can’t count the times I’ve been told that I’m a first time mum by Drs. Every time I hear those words I have learnt that I’m going to be fobbed off within the next 10 seconds. Abort the nice mummy persona and level it up to “don’t even try to go there or I’m physically going to chop your arms off, then your legs, then maybe head” persona.
What I’ve learnt from not being listened to….
- If there’s one thing you always do as a mum, make it be to trust your instinct. Evie’s jaundice was getting worse and I got fobbed off by the midwives as a first time mum and was told ‘that’s normal’ and she ended up in hospital very poorly the very next day. Now this.
- Drs have a budget for prescriptions so don’t like giving them out. If you have eliminated everything that could help but hasn’t, demand they humour you and give it a try
- Don’t go to one certain Dr at Cotgrave….he obviously knows nothing about children. I praised him and would only go to him before all of this!
- Mother always knows best
- There are Drs out there who would sooner call you a hypochondriac mum than actually listen. Don’t take it lying down.
This is an essay, but I have to put my experience out there. This may all be coincidence, she may not have an intolerance (although she probably has!) but if I help one other mum get the help she needs then this post has done its job.