– DOB: 30th June 2019 (6mo)
– EBF till 5mo with some introduction to solids since under the guidance of paediatric dietician Dr. ****
– Suffers from CMPI (diagnosed by paediatrician Dr ****) and possibly other non-IGE mediated food allergies, mum on elimination diet; also had colitis/ inflammation
– Was on daily 5ml Ketotifen (anti-histamine with sedating side-effects) before bed for 3 months, recently stopped
– Bed shares with mum, sleeps on her side with white noise/ bunny/ pacifier in darkish room (not blackout) with mum lying next to her and often holding her arm/ hand to calm her
1. Feeding challenges:
2. Sleeping challenges:
– Mahalia is an intense baby, very focused/ alert, has always been very sure of what she wants from birth and has expresses strong preferences. As an older baby she will fight hard to get things her way (eg: will take the spoon out of your hand and throw it if you try to feed her when she isn’t keen, smash away a bottle in the way of her line of sight, arch her back and scream if you try to feed her in a cradle hold/ outside home etc)
– She also has massive FOMO and loves to ‘stare’, she will go to bizarre lengths to engage with her surroundings (including fighting cuddles even in the dark to look at the night light)
– She is quite social and loves new experiences, and gets quite wired easily. It is quite hard for her to shut things off and calm down before sleep
– Mahalia used to be quite a calm baby who did not fuss much but lately seems to have gotten constantly fussy in recent weeks for no apparent reason.
– Vaginal birth with mum having a 3(C) tear and PPH with 2L lost. Mahalia was given skin-to-skin by dad for 3-4 hours while mum was in surgery
– Breastfeeding was easily established, with mum having plentiful milk supply and Mahalia latching like a champ from day 1
– Given that mum has a connective tissue disorder which causes musculoskeletal pains and painful hands, side lying feeding was our go to from the start and became increasingly the norm as Mahalia got heavier, more wriggly and less keen on a cradle hold. She will now not feed effectively (if at all) in any other position
– Mahalia is an efficient feeder and mum has a quick let down. A poor/ distracted feed is 1-2 minutes, a typical one in the day is 4-5 minutes, a full one (normally only at night these days) is 7-8 minutes. Both breasts are offered.
– After refusing a bottle (and pacifier) till 4mo, Mahalia suddenly started accepting both (possibly once oesophageal inflammation from allergies settled as this coincided with her treatment) and for a while would only take a bottle when out and about, but lately has been refusing that as well, although we haven’t tried very often since mum does not have much pumping success (can’t seem to letdown while pumping, but have excellent output when tandem feeding/ pumping, which is hard to do when side lying feeding)
– In the early days Mahalia used to comfort feed quite a lot (possibly due to allergies) and nurse/ suckle for ages to fall asleep. She now shows strong preference for the pacifier, which is possibly interfering with lengths of feeds as she demands a pacifier mid feed once she gets sleepy
– When at home Mahalia struggles to go longer than 2-2.5 hours without feeding and starts to shout for milk at this point; this is similar when we are outside, but will refuse to latch even though hungry, so we end up giving the pacifier and she will go 5-6 hours without nursing. She also refuses a bottle of breastmilk most times these days.
– Given this timeline and feeding position, we have gotten into the habit of nursing just before sleep and she associates this and cuddling her bunny as part of her sleep routine (eg: if we nurse not at nap time, she will ask for the pacifier and try to put herself to sleep post feed and generally fail)
– The only way to get her to nurse in a non side lying position is to give her the bunny she cuddles while sleeping and/or switching the pacifier for the breast but this only results in a short feed to take the edge off and she in hungry again shortly after.
– Mahalia was given formula once in hospital before milk supply was established and projectile vomited immediately, but we never made the connection then with CMPI.
– Mahalia had several symptoms from weeks 7/8 but it took us till about 3mo to realize that they were connected when everything hit a crescendo (vomiting, diarrhoea, extensive eczema, rashes and flushing, tired and unwell, reflux, sleep issues, mucus and blood in stool, abdominal cramps etc.). Mum was already on a gluten free diet (but not strict) and progressively eliminated all gluten, dairy, soy, egg, caffeine and saw improvement. However we were still left with inflamed bowels, straining for hours in the night only to pass large clumps of slimy pale coloured jelly clumps. Eventually she was diagnosed with CMPI, possibly other non-IGE intolerances (skin pricks for IGE mediated allergies were negative, patch tests also inconclusive) and colitis and was put on daily Ketotifen for 3 months which helped settle her remaining issues, although her stool never returned to normal and remained quite slimy and mucussy with occasional streaks of blood. Her eczema is being managed through typical protocol of steroid creams/ emollients/ gentle detergents etc. but still flares occasionally. I am aware that Amanda does not believe in cow’s milk passing in large enough quantities through breastmilk to cause significant reactions, but would like to agree to disagree here. Happy to share full medical reports if helpful.
– We stopped Ketotifen about 2 weeks ago given that we were starting solids and wanted to assess the impact without interference from anti-histamines.
– Mahalia has been prescribed Neocate but refuses it. We have now requested a prescription for Aptamil Pepti but have not yet tried this.
– Mum gave Mahalia tasters of her food from 5 mo occasionally, and started purees at 24w following Dr. ****’s suggested protocol. Mahalia showed initial excitement for the eating experience but after a few days started to get disinterested and eventually resist food altogether, getting frustrated when being repeatedly offered both purees and finger foods. This coincided with the onset of constipation – initially bowel movements slowed from a minimum of 4-5 a day to 1 every 2-3 days and then stopped altogether till administered Lactulose. We have again not had a bowel movement for 4-5 days now and have given her lactulose again.
– We have also just started giving her 5 ml Sunsweet prune juice and 5 biogaia drops daily on advice from her dietician
– We are letting her play with finger foods now and not feeding her and have seen some limited renewed interest in food. She seems to dislike purees and finger foods that are quite soft (soft broccoli heads, well cooked butternut squash sticks), but enjoys chomping on things with texture and bite (tenderstem broccoli that is not very soft, dry toast fingers, chicken pieces) but since she can’t swallow these effectively she does not end up actually eating much.
– So far we have introduced sweet potato, butternut squash, courgette, pear, apple, toast, broccoli, potato. We are struggling to follow systematic food introduction to track any reactions given the food refusal and are trying to just give her finger foods she shows interest in when we are eating, but avoiding histamine rich/ allergenic foods till we are able to give them consistently for three days in a row with proper consumption.
– Mahalia has a typical wake window of 1.75-2 hours and is offered a nap every 2 hours. Given her tendency to catnap, she typically has 4 naps between waking at 7/7.30 and bed at 6/6.30, but is always exhausted in the evening and we struggle to stretch bedtime even to 6 on many days.
– In the early days mum nursed Mahalia to sleep. When that stopped working, we started to rock her to sleep but she would keep popping her head out and looking around. So we would cover her eyes with a small face towel or bury her head in our necks and rock her to sleep (but in very particular ways and angles or she would get upset).
– This stopped working after a while and although it got her sleepy, she couldn’t make the last mile happen, likely because rocking and touching was overstimulating. Bouncing her in a wrap/ sling with a muslin cover over her (to create darkness) worked but was quite hard work.
– Once Mahalia started taking a pacifier, we were able to get her to sleep (naps and bedtime) without rocking with the following routine – lights off/ sleeping bag/ laying her on her side/ white noise machine on/ bunny to cuddle/ breastfeed/ pacifier/ mum lying next to her. Since she lies on her side she tends to flail the top arm about while fidgeting with her bunny and ends up tossing it behind her and then crying for it. This happens repeatedly and she thrashes her arm and bunny around for ages which interferes with calming down for sleep so mum holds her arm down gently for a while to encourage her to calm down.
– When out of the house, she will nap in the buggy with a pacifier and the sunshade down
– She wakes from naps in 22/ 26 minutes typically with a start, but we are sometimes able to extend naps if mum sleeps with her and helps her transition or the buggy is covered with a snooze shade and is kept in motion.
– During night wake ups, she used to be easy to resettle with the pacifier or a feed and bringing close to mum in a cuddle (Easy as we are bedsharing), but just recently we are getting some harder to settle moments/ longer wake ups. Sometimes mum singing songs that we sang in the early months can calm her, but sometimes we have had to resort to bouncing her in a carrier even now.
– Dad works long hours and is not around in the evenings to support with the program. Any days where dad’s input will affect success should be scheduled for the weekend – perhaps it makes sense to start the program on a Friday.
– Parents have poor tolerance for leaving baby to cry and would like to minimize this
– Would ideally like to lose the pacifier but it is a key tool in managing meltdowns when out of the house and Mahalia is hungry but refusing to feed; we can only lose the pacifier if we change behaviour around nursing/ feeding or find a different coping mechanism
– Nursing/ feeding challenges and short naps are the main priority for us
– We are currently in the process of doing up her nursery which should be ready before the program starts. We are keen to move Mahalia into her own room with Amanda’s help, but will start trialling naps in her nursery before then.
We have struggled to get into a routine, but here is a best approximation of our days:
5.45am – Nurse 7-8 min
7 am – Wake up
7-8.30 am – Play
8.30 am – Nurse 3-4min
8.40am – 9.10am – Nap
9.30 -10.00 am – breakfast (hardly eats anything if at all – 3-4 spoons of puree or a 4-5 bites of finger foods)
10.15am – Nurse 1-2 min (hungry and asking for milk, but get distracted and stops prematurely)
11.00am – Nurse 3min (refuses to nurse if we are out of the house, and is given a pacifier to calm down)
11.15 – 11.40am – Nap (in buggy if out)
12.30 – Lunch (plays with some finger food and eats very little)
1.30 – Nurse for 4-5 min (skips this too if we are out, or may do 1-2 mins)
1.40 – 2.05 pm – Nap
3.45pm – Nurse 3 min (or longer feed if we were away in the morning)
4 pm – 4.25pm – Nap
5.15pm – Bathtime
5.45pm – Nurse 3-4min
6.10pm – Asleep
7.00pm – wake up, settle with pacifier, mum laying next to her and helping calm down
7.15pm – back to sleep
8.30pm – wake up and resettled with pacifier and mums help in 5-10 mins
9.45pm – wake up to nurse for 7-8min and back to sleep
12.30am – wake up to nurse for 7-8 min and back to sleep (this is a new addition at 5mo and even now sometimes skips this feed)
2.30am – wake up and resettled quickly with pacifier and cuddles
3.15am – wake up to nurse for 7-8 min and back to sleep
6.00 am – wake up to nurse for 6-7 min and back to sleep
