Recent Activity
Activity List
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Hi
We are a parent/carer support group in Suffolk, supporting those caring for children and young people with mental health issues. We offer regular meetups, training, phone helpline, social media groups and messaging, signposting to other local help.
0August 16 -
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Hi there, I've just joined the community too, my son is 11months old and just diagnosed with pks. Wondered if you wanted to chat?
Cheers
Jo0July 28-
PKSkakeiYes! Definitely! There is no-one in this group with the diagnosis and I haven't been able to touch base with anyone on any forum. It can be so isolating. I don't quite know how to start a chat on this website, but set it up if you know. -
Josie124Hi there, not sure this community working I've sent a few messages and they not registering hope you get this one. If you friend request me on Facebook we can chat on messanger, be good to talk to someone else, it appears that not many of us. https://www.facebook.com/joanne.barber.581
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PKSkakeiThis site does seem a bit challenging to navigate. I however no longer have a Facebook presence. I however have Instagram <@coshakei>, Gmail Hangouts and will have Whatsapp later this month when I relocate to the UK next week. Looking forward to finally talking to another mom with a rare PKS baby. Stay strong.
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Hello Alex
This is Cookie. I am a parent of a child with Spina Bifida. I am contacting for two reasons 1) I would like to meet other parents of children with Spina Bififda, 2) I am doing research because of what I have noticed with my child. I was directed to this website to contact other families but I am anxious that I have been frozen out because of my research. It would be nice to know that is the case and I will go back to just getting on with it on my own.
From a frustrated Cookie (and sorry if that is not the case)0July 21 -
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Hello all
Many years ago I became a member of Contact a Family and what was then known as ASBAH (now Shine) due to having a child with Spina Bifida. I had worked with children with various disabilities over the years but had never come across Spina Bifida. I joined the organisations to meet other parents and for a short time communicated with other parents online in the same position before sites were no longer available (can't remember the name of the site). Many things have changed over the years. I have had a constant struggle with the schools for my child, and it continues. I also noticed various things with my child that was not mentioned at her diagnosis, leading me to wonder if it was due to the hydrocephalus or the Chiari malformation. This had led me to try and conduct research, is this a unique condition for my child, do all children with Spina Bifida and Hydrocephalus have the same issues?, etc. etc. etc. I was wondering if anyone will help me answer those questions. Would any of you be interested in helping me to answer those questions.You can access the study by clicking on or selecting the link below:
https://greenwichuniversity.eu.qualtrics.com/jfe/form/SV_9taSGro4D2WSbxb
I am specifically looking for parents of children with Spina Bifida and/or Hydrocephalus, however all parents of children between the ages of 5 and 16 are welcomed. You (as the people who know your child best) are being asked to fill out two short questionnaires. It will be an opportunity for you as parents to see one of the many tools professional use to assess our children. I will be writing a summary of the findings for those parents interested.
This study is totally voluntary and anonymous and in no way intended to upset anyone.
Also for all those parents going through difficulties with their children in mainstream school, Academies, transition and wish to talk, please feel free to contact me.
0July 6 -
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