It’s Just a Bit of Colic, They Said — She Will Grow Out of It
Well clearly she didn’t! This amazing little girl is now nearly four years old and was — at the age of two, labeled with ‘Global Development Delay’ as she wasn’t hitting the expected milestones.
The Story
Sophia didn’t crawl, stand up or walk.
She didn’t vocalise or say words, she only cried.
She didn’t climb a stair, jump, pull toys along.
Her eating habits were ‘odd’ and she craved food and massively over-ate although as she got older would only eat with distraction from tv or iPad and never moved onto ‘normal’ food — she still only eats food mashed up together- no lumps!
Thing is — not one health professional looked at all these and other odd behaviours this little girl had displayed since infancy. No one looked at her then two year history…..
As a baby she had cried night and day, refused milk, lost weight — gained weight — lost weight, had rough, red patches on her skin, often had nappy rash, had terribly erratic bowel movements and ended up in A& E with severe constipation. She used to vomit, have chronic wind and could never be put down.
She was diagnosed with colic and lactose intolerance at the age of 10 weeks and given a lactose free formula and infant gaviscon.
But — that was it.
No follow up, no forward plan and because things had improved a little her parents just thought they had to grin and bear it until she eventually grew out of it!
As many parents do, they just found a way to cope and ‘manage’ their little girl. They managed to get her into a vague routine and implemented a bath and bedtime. This helped but it was always fraught, challenging and not the calm peaceful end of day one hopes for.
As the months passed it became accepted that she was a light-sleeper and was often disturbed at the slightest sound and she never seemed to sleep well, often calling out throughout the night. She developed a cough and most nights you would here her endlessly coughing. Recently Sophia has been prescribed inhalers but these have had no effect whatsoever and her nighttime cough remained unexplained. In fact she’s had croup a number of times and twice in the last few months.
Sophia’s mum became obsessed with the temperature of the house and specifically Sophie’s bedroom as the child was always so hot and sweaty throughout the night.
Habitually, Mum worried that Sophia would get too hot at night and would creep in to check and although she continually asked the question — ‘Why is she so hot & sweaty?” there was never an answer or an explanation given.
Another unexplained behaviour was that Sophie was never ‘still’ even when she appeared to be asleep. She would thrash about, kick out and always do laps of her cot throughout the night and now being in a bed, she would always end up upside down and get in to the weirdest positions. Needless to say Sophia is always extremely tired throughout the day as the quality of her sleep was so poor, but the parents could never understand why this was the case.
Also, Sophia’s breath has often smelt ‘off’, she dribbles quite a lot and chews really harshly on her fingers. Her lips are bright red almost to the point of seeming sore, her cheeks are often burning red, dry and rough which was actually diagnosed as eczema, which no prescribed cream has ever cured.
She’s always had very waxy ears and often pokes and pulls at them and rubs her face & eyes.
*Observing this behaviour alone and knowing that it’s only been in the last few weeks that Sophie has started to say words I find it shocking that she hasn’t ever been referred to an ENT specialist - let alone been given a proper hearing test!
Soon after her 2nd birthday Sophia decided to walk and began taking steps and at nearly 4 she has now a complete range of movement and exceeds the expected milestones of balance, dexterity etc.
But — one of the biggest problems the parents faced as Sophie got older was managing her challenging behaviour. She developed an almost aggressive response, would lash out, hit, throw things and have total and complete meltdowns at the slightest thing. Her parents have brilliantly found ways to get through these tantrums — of which there can be many in one day, but it’s been completely & utterly exhausting for all. Sadly this behaviour was just attributed to Sophia’s ‘special needs label’ and no one was ever able to help or give any explanation why.
Sophia has been under the care of Physios, a speech & language therapist, a paediatrician and the special needs care team and was given a place in a special needs nursery for a while. However, with many services being dropped due to cut backs the parents have mostly felt completely alone, battling through and trying to manage as best they could.
So this onerous label of development delay was bestowed upon her, but sadly without any real testing or proper assessment to back it up and seemingly without any real understanding of her condition. She was tested ‘on the spectrum’ but nothing resonated and no definitive answer has ever been given.
However, the ‘Global Developmental Delay’ label will be on her medical records for life and could have a huge negative impact on her future, but in my opinion it shouldn’t even have been put there in the first place.
My diagnosis and explanations
I was actually invited to come and work with this family to help their new baby who at 11 weeks old was really struggling to feed, sleep and constantly cried. After listening to my reflux podcast with Made By Mammas, Mum suspected her baby had reflux and asked me to visit.
It was during that first afternoon when we sat and talked about her baby and discussed all his symptoms that I asked about Sophia. I sat listening in stunned silence as Mum told me the whole sorry story about her beautiful Sophia and what they had been through. She actually even made apologies to me in advance, saying sorry if Sophia ‘kicked off’ when she got home. I reassured her I would not be phased and there was no need to excuse Sophia’s behaviour to me. Understanding the severity of baby Patrick’s reflux and having asked hundreds of questions relating to Sophia’s infancy, I already strongly suspected what was the root cause of all Sophia’s problems.
When Sophia came home I was immediately struck by her engaging, confident, funny, bright, outgoing personality and I could sense she had a great depth of understanding, awareness and intuition. Within minutes Sophia had ‘assessed’ me and seemed to decide I was acceptable, but I will never forget how she would look at me — almost in secret and I would catch her gaze and we would just look at each other... I’m absolutely certain Sophia ‘knew that I knew!’ She listened to me talking to Mum and Dad, explaining things to them about Patrick’s symptoms & behaviours and relating them to some of their past experiences with Sophia.
The more time I spent observing Sophia, the more I was absolutely certain that here was a child that had experienced severe reflux as a baby, suffered with a cows milk protein allergy and had never grown out of it!
The next day we all went to see a paediatric gastroenterologist who after much discussion, 100% concurred with my thoughts and prescribed Sophia Omeprazole and advised to put her dairy & soya free and restrict wheat & gluten in her diet. He too, was utterly shocked at the GDD label bestowed on this little girl and agreed with me that there really was no developmental problem with Sophia as such, but she had developed many extreme and odd behaviours in response to being in pain from acid reflux.
The burning, red lips and sore cheeks & the smelly breath are caused from acid coming up from the gut.
The sweatiness at night is caused by her body producing adrenaline in response to pain and her unconscious fear of enduring another night of discomfort.
The light sleep is a symptom of her never really going into proper, restful deep sleep because she’s too uncomfortable to settle into her natural sleep cycles.
The thrashing around at night is because her system is on high alert and it’s almost like her tummy is exploding with mini fireworks whilst trying to digest something it’s intolerant to.
The cough is from her body producing mucous to try and flush away the acid that constantly rises into her oesophagus and throat.
The constipation and then loose stools are created as her body bounces from one extreme to the other, struggling to digest the cows milk protein and lactose.
The excessive wax in the ears builds up as the Eustachian tube gets narrowed due to acid damage and the fluid from the middle ear is unable to drain effectively. Thus causing a build up of fluid and pressure in the inner ear which is commonly known as Glue-ear which can impede hearing and very common in reflux babies and children… and in Sophia’s case has contributed to her lack of vocalisation.
Along with this some children who have continuing acid reflux issues will have enlarged tonsils and adenoids, may have trouble breathing and seem asthmatic, often snore and mouth breath — especially in sleep.
After recently seeing an ENT specialist it’s shown that Sophia has massively enlarged tonsils and suffers with a mucous build up in all her airways… hence the cough and night- breathing struggles. The soreness in her throat from acid damage will have also been a major factor in why she didn’t speak for so long — quite simply it hurt her to talk so she didn’t bother!
However, after just over 2 months on Omeprazole and her allergen free diet I’m pleased to report that Sophia is so much better in every respect.
Her sleep is now undisturbed, she’s not hot & sweaty, stays still & is peaceful throughout the night and has no cough!
Her behaviour has changed dramatically and although she still tends to get cross quite quickly, it rarely escalates into a full blown tantrum as her parents are able to talk to her about the frustration she’s experiencing and she will calm immediately instead of completely ‘losing it’!
I’ve compiled this case study in the hope that it may ring bells with other parents out there and facilitate them to get help for their children who might be experiencing similar issues to Sophia.
If anything resonates for you and you would like more information then you can book a phone consultation directly with me so I can discuss any issues and concerns you may have regarding your child — Alison xxx
Book a consultation with Alison on her website.
