Jan222019
Cow's Milk Protein Allergy (CMPA)

Cow’s milk protein allergy (CMPA) is the most common food allergy affecting infants and young children. CMPA can be classified as either immunoglobulin E (IgE), non-IgE mediated allergy or a mix of IgE and non-IgE mediated. The main distinction between these two types of allergy is in the pathophysiology and onset of symptoms.

Recent research shows that the average time for an infant to be diagnosed with a suspected intolerance to cow’s milk is 2.2 months. This time delay has not improved since 2010! 

This is rather disappointing since, in the last 10 years, there have been many more guidelines produced on the diagnosis and management of CMPA.

TJ’s mommy tells the story of her little boy and the drama involved in getting a diagnosis of CMPA.

TJ’s Story

Since TJ was 4 weeks old he has battled every night without fail with what we were told was ‘colic’ & reflux.
Unfortunately, breastfeeding didn’t work out for us so we moved onto formulas.
He has been on 6 different formulas since and none of them have agreed with him.
Watching your baby in agony, inconsolable night after night and not being able to help was heart-breaking but it sent me on a mission to solve the problem.
Even after being told 100 times there wasn’t one having made many trips back and forth to the doctors, being made to feel silly and at times like crazy neurotic first time parents!
I researched what felt like every possible forum, read what felt like every article and book online to solve it myself! At times I felt like I had cracked it and at other times (a lot of the time) it felt like we were back to square one…
Infacol, gripe water, fennel tea, baby massages, warm baths, bicycling his legs, you name it we tried it and it didn’t work.
Whenever I mentioned to the GPs that I thought it was his formula or dairy they always shut me down straight away as if I was making it all up.

A Mom’s Intuition

There was no way he could have a problem with dairy they said, his skin was fine and he was gaining weight. Even one doctor laughed while poking his belly saying ‘look at this chap there’s nothing wrong with him if he had a dairy allergy he would be covered in a rash or have difficulty breathing.” I said I didn’t think it was an allergy but more of an intolerance as his symptoms involved his tummy. He never agreed and again was told me it was normal colic and he would grow out of it.
TJ always sat smiling on my lap; of course, the DR never saw him in screaming agony or throwing up 6oz of his milk as the appointments were not in the evening, which was when TJ was obviously at his worse.
His symptoms included:
• Constant screeching screams – not like any normal cry that can be soothed or distracted
• Reflux
• Frequent hiccups that were very loud and painful sounding
• Constantly bringing up milk even sometimes hours after a bottle
• Difficult to burp, and some burps made him cry
• Colic
• Excessive wind all day every day! Very smelly too. He also cried when passing wind
• Runny and mucus-like nappies yet really, really strained to get it out. Sometimes also for a tiny amount.
• Never wanted to lay down/ always slept on us or in a swinging chair etc.
• Wakes up 5+ times a night (still does at 10 months  )
• Even when asleep stills wriggles with wind which eventually wakes him up
• Refusing to eat food when weaning began
• Completely fine in the day only became uncomfortable during feeds at naptime and then the whole evening.
After months of an endless battle and ongoing research, I knew it must’ve been the dairy in his formula so I took TJ for a private kinesiology food allergy test. I was aware it was not recommended on the NHS website as it’s not a reliable source but I needed the confirmation I wasn’t going mad as I was still getting nowhere 9 months on with the GPs. The test revealed he did, in fact, have a problem with dairy….

If We Only Had Been Listened Too…

I couldn’t even describe my thoughts after hearing that! I was so angry but so relieved it could all be solved now. With the results, I took them back to the GPs to then be told because they didn’t do the test themselves and we had it done privately they cannot be sure he does have a dairy intolerance and was unable to prescribe the dairy free (hypoallergenic) formula we needed.
So we decided to go against the GPs word and bought the formula from a local chemist £18 for a tiny 400ml tin. We noticed the difference immediately no wriggling during his bottle, no crying, no tossing in his sleep, no throwing his head back, no hiccups. NOTHING!!
It turns out being dairy free has improved TJ’s symptoms more than any Gaviscon, Infacol or belly rub has ever done in the 9 months we have been trying. The doctors now half believe us and have referred us to a pediatrician for a second opinion, and only then will they prescribe us with the milk.
Still a while to go yet but we are so close to the end of this awful journey!! This whole situation could’ve been handled so differently from the very first day if we was just listened too.

TJ’s Mom – Words of Encouragement to other Parents

I really hope that spreading TJ’s story will help anyone else going through something similar hoping to get a quicker diagnosis which will prevent months of unneeded agony. My advice would be to definitely trust your instinct! You know your baby more than anyone and you know when something isn’t right. Get as much info as you can on cmpa & cmpi, research and familiarise yourself with what’s called a Non IgE mediated reaction and record as much evidence as possible; photographic (photos of bad nappies or videos of baby screaming) as well a written account of all possible symptoms, food diaries etc. Go into the GP as armed as possible and you cannot be refused a referral.
The website above provided me with so much info I needed, I just wish I found it a lot sooner!
Thank you for reading, TJ’s mummy.

Nishti Writes

Thank you to TJ’s mommy for willingly wanting to share her story. I am too familiar with the issues parents have to go through before diagnosis fo CMPA and it is heartbreaking.

I want to use this opportunity to tell parents that it’s important to keep yourself empowered and informed and read around the topic through reliable resources such as Allergy UK and iMAP guidelines. I run an online support group for parents whose child suffers from CMPA (other other food allergies). It’s free to join and the link can be found here.

As a specialist dietitian, I am trained to diagnose and treat cow’s milk protein allergy.

I will liaise with your GP and/or pediatrician and therefore ensure a quicker route to diagnosis and treatment.

If you require immediate help and support please contact the team on info@nishtischoice.com or call 078257 50040 (country code +44).

 

Warmly,

Nishti

Please note that this information neither is medical advice, nor is it meant to replace the advice of your doctor or your own personal dietitian and I assume no liability for the use or misuse of this information.

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