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‎07-05-2017 10:01 PM
‎07-05-2017 10:01 PM
Child with chd, 22q deletion syndrome and total oral aversion
Hi
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?
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‎08-05-2017 06:26 PM
‎08-05-2017 06:26 PM
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
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‎08-05-2017 07:05 PM
‎08-05-2017 07:05 PM
Re: Child with chd, 22q deletion syndrome and total oral aversion
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.
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‎10-05-2017 11:57 AM
‎10-05-2017 11:57 AM
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.
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‎03-02-2018 09:27 PM
‎03-02-2018 09:27 PM
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.
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‎05-02-2018 07:36 AM - edited ‎05-02-2018 07:38 AM
‎05-02-2018 07:36 AM - edited ‎05-02-2018 07:38 AM
Re: Child with chd, 22q deletion syndrome and total oral aversion
Above message
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‎23-05-2018 10:07 PM
‎23-05-2018 10:07 PM
Re: Child with chd, 22q deletion syndrome and total oral aversion
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‎24-05-2018 08:02 PM
‎24-05-2018 08:02 PM
Re: Child with chd, 22q deletion syndrome and total oral aversion
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‎22-09-2022 10:00 PM
‎22-09-2022 10:00 PM
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?
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‎23-09-2022 05:00 PM
‎23-09-2022 05:00 PM
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 @greenpea @Judi9877