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Child with chd, 22q deletion syndrome and total oral aversion

MomoNoHannaNew Contributor07 May 2017, 10:01 pm AEST

Child with chd, 22q deletion syndrome and total oral aversion

im looking for support, suggestions and people with similar situations.

I am a full time carer for my 2 year old son.

He has had two open heart surgeries.

The last one made him very sick.

He retained fluid through his entire body and had a drainage issue.

Thankfully strong medicine helped.

He is still fluid restricted though.

He has truncas arteriouses (you can google).

He is currently palliative but is currently very stable.

Due to a lot of intubations for his two open heart surgeries and low weight.

He has developed a total oral aversion and is tube feed.

The strange thing is, he loves taking his medication orally from syringes.

He is feed mostly from Ng tube feeds. For a year he was feed via TPT.

So he is now on 3rd hourly bolus Ng tube feeds. While on tpt he was continued feed 24/7.

He was taking a bit from a bottle but now is chucking a hissy fit at the sight of a bottle.

I now mostly off a syringe of milk before each feed.

Taking very little solid food.

I have only just got him to accept a spoon and bowl.

Anyone with suggestions or dealing with something similar?

10 replies

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In response to: Child with chd, 22q deletion syndrome and total oral aversion

CherryBombSenior Contributor08 May 2017, 6:26 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hi @MomoNoHanna

Welcome the Forums. It's sounds like you and your son have gone through a lot, in such a small amount of time.

The SANE Forums has a focus on mental illness, so I can't think of anyone who might share a similar experience. But if you find it useful, there might be others on here who can relate to caring for a child, and the stress that this entails.

Otherwise, you could try Essential Baby. It's online community for parents (new borns and infants, I believe). I'm not sure how relevant it is for you, but it is perhaps more aligned with your concerns, as most parents here are discussing concerns with adolecent and adult children.

I hope you can find the support/advice you're looking for.

CherryBomb

In response to: Child with chd, 22q deletion syndrome and total oral aversion

MomoNoHannaNew Contributor08 May 2017, 7:05 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hi

Thank you for the suggestions but he is 2. So technically a toddler. So he is kinda in between the two forums. I've been over to essential baby forum and very few are full time carers for a toddler with the same challenges as my son. Unfortunately we are in rarities central in this house. Im looking for more fellow carers support, than other parents. That's why I visited here. Yes I'm a mum but I could classifie as a nurse.

Thank you for the suggestion though.
It's nice that you took the time to reply.

In response to: Re: Child with chd, 22q deletion syndrome and total oral aversion

NikNikSenior Contributor10 May 2017, 11:57 am AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hi @MomoNoHanna

Just to add to Cherrybomb's suggestions, some other people you could contact include:

Raising Children Network: http://raisingchildren.net.au/ which has online forums too.

Carers Australia: http://www.carersaustralia.com.au/ could be a useful organisation for you to get support directly

Additionally, your child's medical team could also have suggestions on places you can discuss this with others who have been through similar situations.

Best wishes for you and your family.

In response to: Child with chd, 22q deletion syndrome and total oral aversion

chronicNew Contributor03 Feb 2018, 9:27 pm AEDT

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hello - we have an adult daughter with VCFS. She could not talk when an infant, required speech pathology but talked fluently after a pharyngeoplasty when 4 years old. She struggled at school but eventually graduated Yr12 and went on to obtain a Cert IV in Remedial Massage. When she was in her early 20s she developed schizoaffective disorder and has several psychotic episodes since. The reason I have entered into dicussions on SANE is that we are told VCFS is the second most common genetic disorder after Down syndrom, further 30% of VCFS sufferers develop a serious mental illness in their earl adulthood.

BUT ... we have yet to come across other carers who have a child with VCFS who has developed a serious mental illness. Doing a search of SANE I was disappointed to come across any forum which refers directly to VCFS ... yours was the only one.

I see your post was from some time ago ... I hope you have managed to cope with your child's very disabling condition.

In response to: Child with chd, 22q deletion syndrome and total oral aversion

Unknown userMember05 Feb 2018, 7:36 am AEDT

Re: Child with chd, 22q deletion syndrome and total oral aversion

@MomoNoHanna

Above message

In response to: Child with chd, 22q deletion syndrome and total oral aversion

QuinceCasual Contributor23 May 2018, 10:07 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hello, my 28 year old son with VCFS was recently diagnosed with schizophrenia type disorder. I too found this was the only thread relating to VCFS.

In response to: Child with chd, 22q deletion syndrome and total oral aversion

Unknown userMember24 May 2018, 8:02 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

@MomoNoHanna @chronic
Above message

In response to: Re: Child with chd, 22q deletion syndrome and total oral aversion

QuinceCasual Contributor22 Sept 2022, 10:00 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Hello, as a parent of an adult son with 22q VCFS and schizophrenia, I am seeking contact with other parents?

In response to: Re: Child with chd, 22q deletion syndrome and total oral aversion

tymeModerator23 Sept 2022, 5:00 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

Good evening @Quince ,

I actually don't know anything about this syndrome. I'm so sorry I can't help.

However, I can maybe link you to people who perhaps know more about schizophrenia? @RiverSeal @Anastasia @Bunniekins @Judi9877

In response to: Re: Child with chd, 22q deletion syndrome and total oral aversion

BunniekinsSenior Contributor23 Sept 2022, 6:32 pm AEST

Re: Child with chd, 22q deletion syndrome and total oral aversion

@MomoNoHanna i have 3 kids. with problems ranging from asd, epilepsy and schizophrenia so i appreciate the pain parents go throughi tend to haunt the music thread. you are most welcome to come over and say hi. love pea .

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