Update on reflux, Drs & Nutramigen- Cows Milk Protein Allergy

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….

  1. 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.
  2. 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
  3. 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!
  4. Mother always knows best
  5. 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.

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3 thoughts on “Update on reflux, Drs & Nutramigen- Cows Milk Protein Allergy

  1. Valerie says:

    Well done, mama!! As a mom of four, I can totally relate – doctors are sometimes no help at all and you have to find your own answers. ((hugs)) I’m sorry you’re having to go through this with your little one.

    Liked by 1 person

  2. Sarah says:

    Wow wow wow! You and I were going through the SAME thing at the same time! I am in Florida, USA and our baby was diagnosed with reflux at 5.5 weeks old. The medicine they prescribed was a stronger one– Omeprazole and is not approved by the Food and Drug Administration so our insurance would not cover it. We changed to Zantac and his reflux got horrible again but we wanted to stay away from the strong medicine since long term effects haven’t been researched. I desperately called the pharmacy to reorder the strong medicine one Sunday evening because we just couldn’t take it anymore. He was so miserable. I also noticed that his eczema was getting bad- he was scratching at his face and head. I happened to stumble upon “eczema and allergy” and put two and two together and thought it had to be the milk-based formula! We have tried 4 different formulas, even those for those with milk sensitivity and they still were garbage. I read about Nutramigen and we started that on Aug 22 and haven’t looked back since! He is still on Zantac but his reflux is so much better. Sometimes we skip a dose– we could never skip a dose of even the stronger medicine before. His eczema is better. We too are SO frustrated with our pediatrician. Why didn’t they recommend he go on a non-dairy formula before prescribing us all this medicine? Why did I have to research and deal with a baby who was so miserable for so long until I found the answer?? I was just on the phone with our pediatrician yesterday asking for a prescription and she said she’s never heard of writing a prescription for that. I asked her what the harm would be- she said there isn’t one but to call my insurance first to see if they’ll cover. This makes no sense. She should write me the RX and see if they deny it. Ugh!!! Our little guy turned 16 weeks old yesterday and it’s so sad that he’s only felt good for the past 2 weeks!!!

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    • marie says:

      I know how you feel it’s awful isn’t it! I’m so glad to know that I’m not just a crazy mum who thinks everything. Is wrong with their child.
      Why should us mums have to fight and fight to help our babies who WE know best, all because the Drs aren’t listening to us! Drs wouldn’t even prescribe Evie anything more than gaviscon so omeprazole was a no go. I’m just so frustrated and angry at how mums are treated and labelled as hypochondriac parents. Or ‘first time mums’ like me get the same talk over and over. The Nutramigen seems to be working, but we have to ‘challenge’ Evie next week and put her back on her old formula to see if it really is working for her. I’m so nervous!! Your questions are exactly what I said. Why on earth did I have to do my own research, and research literally all hours of the day to tell THEM what it could be?! They’re the qualified ones! So so frustrating! Your paediatrician seems to talk nonsense….the majority of the websites I looked on were American forum posts saying that they’d had Nutramigen or even Neocate prescribed for their child, that’s how I got my initial information! Don’t you back down, really hope your insurance covers it. Not sure how medication etc works over there but if l they don’t cover it I hope she can still prescribe you it. Hope your little boy continues to do well, and well done you for not backing down and letting it all get to you xx

      Like

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