Special Needs Children Resources - Peg, Autism, Lung disease
Oct 29th 2022, 1:28 am
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Joined: Jun 2022
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Special Needs Children Resources - Peg, Autism, Lung disease
Hi all,
My husband (BC/USC) and I (USC) have a 6yo daughter (BC/USC) who has special needs. She was born at 25W. With that she has Chronic Lung Disease. We were recently there visiting and she got really sick. Ended up in ICU for five days. We had great support and not so great support. For example, upon discharge we were told to see a local physician before flying. The Surgery in one town wouldn't even consider to see her. Said we had to call 111 (I think that was the #). Said since she was not a British Resident they could not and would not see her. Ended up talking to the surgery in another town nearby and they took her right away, got her RXs she needed, and was so helpful.
Anyways -
Dr Questions - I am looking for resources for Dr. who work with child with special needs. Is there a search for that? More just word of mouth from other parents?
Autism questions - What resources are available for children with autism? She is actually in school now and learns very well. Just a bit delayed. She gets therapy through her school, but not sure how that works in the UK. Did your child have to be re-diagnosed in the UK?
Peg - She has a G-Tube\Peg. She only uses that to eat so she is on a special formula called Peptamin Jr 1.5. Anyone know if that is offered in the UK? Anyone on here get supplies for their child? How does that work? I worry of getting there and not being seen quick enough to get more food before it runs out. I can stock supplies up, but the formula is heavy and would be expensive to ship.
Any good FB groups for Special Need parents that I should join? Feeding Tube, Autism, Preemie? Any other resources you can share with me?
My husband (BC/USC) and I (USC) have a 6yo daughter (BC/USC) who has special needs. She was born at 25W. With that she has Chronic Lung Disease. We were recently there visiting and she got really sick. Ended up in ICU for five days. We had great support and not so great support. For example, upon discharge we were told to see a local physician before flying. The Surgery in one town wouldn't even consider to see her. Said we had to call 111 (I think that was the #). Said since she was not a British Resident they could not and would not see her. Ended up talking to the surgery in another town nearby and they took her right away, got her RXs she needed, and was so helpful.
Anyways -
Dr Questions - I am looking for resources for Dr. who work with child with special needs. Is there a search for that? More just word of mouth from other parents?
Autism questions - What resources are available for children with autism? She is actually in school now and learns very well. Just a bit delayed. She gets therapy through her school, but not sure how that works in the UK. Did your child have to be re-diagnosed in the UK?
Peg - She has a G-Tube\Peg. She only uses that to eat so she is on a special formula called Peptamin Jr 1.5. Anyone know if that is offered in the UK? Anyone on here get supplies for their child? How does that work? I worry of getting there and not being seen quick enough to get more food before it runs out. I can stock supplies up, but the formula is heavy and would be expensive to ship.
Any good FB groups for Special Need parents that I should join? Feeding Tube, Autism, Preemie? Any other resources you can share with me?
