LukasSymptoms and problems

Breathing• Stop breathing- From only few weeks old. - When he was younger Sometimes awake (witnessed

by HV) - Stop breathing during sleep times

- sometimes apnoea alarm enough to trigger him- Sometimes turning him round or picking him up- Sometimes self recovering before apnoea alarm goes of- 3 episodes that required rescue breaths Coming round after apnoea. Cry then

stop breathing, cry stop breathing etc. till completely come round

Breathing

• Irregular breathing- irregular episodes (video)- Slow breathing 6-12x a minute (during sleep)- Very fast breathing between 60-80x a minute (with out reason observed in

hospital on more then one occasion, video)- Shallow breathing- Sudden gasps and then very upset after having small pause in breathing. We

witness this when in car seat or pushchair. Occasionally we can hear him gasping in bed (he sleeps in room next door)- When asleep often restless short pauzes in breathing then either loud snore or cry.

Moving around with it a lot. (voice recording) (video on phone)

Breathing* No air going in- Occasionally episodes where no air goes in (video) (total of 5x)Specialist in Stoke said this could be seesaw breathing which baby’s sometimes do. When discussing last week when seeing nurse that was first in she said this is definitely not that!

• High CO2?!- Most Tosca studies said high co2 at certain times during sleep- Sometimes normal study- Specialist stoke disregarded this said high co2 is not possible without low

o2. (after speaking with some parents with CMS they said this is possible as this happened to their children)

“floppiness”• Floppiness during and after sleep- Often sleeps with tongue sticking slightly out of his mouth- Sometimes full head lag after waking up (video) (co2?)• Floppiness when feeding and sitting in highchair/pushchair/carseat- When sitting in high chair during feeding he always slouches down.

Often episodes where he can keep his head up in the high chair. Better when feeding soon after sleep. (video)- Had to buy different pushchair as cant sit in either of the normal ones

(picture)- Often needs to rest his head (picture). Does this when standing up,

crawling and sitting in high chair.

Floppiness

Floppiness• Floppy episodes of losing all strength- Often after crawling around and standing up for a while- The more active the quicker they happen- When sitting falls forward, sometimes resting head on

floor, sometime whole body goes down. When bouncing on legs suddenly his legs seem to go like yelly.- Doesn’t seem to be based on having being tired and

needing a sleep. Can happen 45min-1hr after sleep if have been very active. (video)- The more mobile he gets the clearer the episodes are

(friends started noticing more and more)- Sometimes floppy days (picture)

Floppiness• Episodes of lessened strength- Sometimes he doesn’t loose full strength but he cant pull himself up anymore and gets

very frustrated. (video)- Sometimes regains strength for a short while then back to floppiness.

• From birth struggling with feeding- Breastfeeding clinic noticed Lukas going floppy during feeding contacted his consultant.- He can suck a bottle for so long and then cant anymore. Only drinks 3-4 ounce at one

time. (had a Nissan fundoplication as wondering if it was because of reflux)- Very messy when drinking from bottle always go round the sides of his mouth sipping to

back. Cant drink from cup. Seems to cope better with food that he can just scoop of spoon and swallow. Although chewing is getting better.

Choking episodes

• Asleep- When Lukas asleep in car seat or pushchair often chokes on own saliva- When eating he sometimes chokes and need to sometimes intervention

by patting back or putting over legs with head down and patting back.- They have been there from birth. When we were still in the hospital after

he was born and I said he kept choking they said it was because of the fact that he was born by section and therefore the gunge hadn’t been squeezed out like with a normal labour

Other• Has had 2 occasion where his right eye hang down. - First time was after sleep stayed for about 2 hours.

Went to gp but had then resolved itself.- 2nd time it happened during a play. Then after a sleep

it had gone.

• When he gets a simply viral infection he goes really poorly.- Has had rota virus 2x, had infected hair follicle

(ended up in hospital admission, 2x a cold- Really high temp 39.6 -40- Completely out of it doesn't move (once during HV

visit)

OtherSleepLukas still sleeps a lot. A normal day with sister nursery drop of often looks like:Sleeps from 6.30pm – 7.00amMorning sleep 9.30am – 11.45am (often has to be woken)Afternoon sleep 1.30 – 4.00

Days without nursery drop of often looks likeSleeps from 6.30pm – 7.00amMorning sleep 8.30 – 11.00amAfternoon sleep 1.00 – 4.00

Blue mouthSometimes Lukas just has a blue discolouring around his lips when awake. Only noticed this 4x