my daughter is on LTNIV (long term non invasive ventilation) for a condition suspected to be CCHS. this has gone unrecognised for 9 months and we have only just stabilsed her at 2.4.... we worried that maybe she could have some adverse effects from battleign to breathe for so long however brain scans are normal.
problem number 1
she has issues with eating, she was a weaned early but struggle to progress through the stages and at age one was still on number 1 teat on bottles as she would choke with any others. i took her off puree jars and began to serve a varity of finger foods. she never ate much at all but i assumed that was because she was still on alot of milk. so i reduced her bottles down from 8 a day to 4. this didnt work. after a year of trying to get her to eat anywhere near a proper amount of food ( and most times regreattably force feeding her) we are still no where and having to resort back to puree (stage 2 -7months) and bottles of hungry infant milk to keep her weight sustained. we always offer normal food first. she will eat little bits but then refuse. we have tried for weeks at a time not offering any alternative (i.e. mushed food) and that doesnt work. we are now waiting on an appointment in january for SALT. today as usual we tried her with normal food, she had sausage chips and beans. we cut the sausage up into small pieces but after choking several times (not usual for her) she didnt want it as happend with the french fries . she never touched the beans. she wolffed down a jar of baby food after refusing to eat anything of mine or my mums plate. she also has been choking today on a size 4 teat on an avent bottle. nearly being sick.
problem 2
she has dreadful behaviour, ano it is normal for a two year old but she is something else. i have volunteered in 4 nurseries so far and have never seen a child so naughty. sometimes she can be the nicest sweetest child but she turns into a devil too. she is violent and ignores all warnings tellings off. i hate getting up and having to deal with it i feel as if it is from morning to night. she is worst in public places. we cannot have her out of her puschair without her being beyond uncontrollable. we have her out everytime we are somewhere public but she doesnt get used to it. doctors have noted that she has behaviour issues due to sleep deprivation ( she barely has any deep sleep time at all). but i have commented recently to my mum about seeing if there is anything the doctor can give her to calm her down. she is either bouncing off the ceiling or completly knackerd!! theres no inbetween. doctors only see the good side of her and there are no situations we are in with the doctors that she really kicks off in.
does anyone really have any ideas at all what we can do??? i have spoken to a complex need support group i am on and many suggested sensory processing disorder for the food issue? but i would love ideas on both food and behaviour fron you guys