Hi, my name is maggines!

maggines
maggines Online Community Member Posts: 2 Listener
edited February 6 in Start here and say hello!

Hi everyone. I’m a new member of your community from today. I would like to briefly tell you my story about my son 10 years old with Downs Syndrome and ASD. He was born as a strong and healthy boy with small numbers of DS futures . Genetic tests confirmed that he has Trisomy 21. He was developing very well till he turned 4. We noticed a regression. He literally stopped doing was he was doing.ASD diagnosis came very quick after 45 minutes of observation.Since then everything changed.Actually it looked like it happened overnight.That is why we are suspicious and we would like a deeper investigation. He developed a heavy nos bleeding most of time at night so we think he might be experiencing some kind of epilepsy when he sleeps.ENT doctor didn’t help. We would like to do EEG and MRI scans of his brain. I am looking for parents with similar story and parents who know where we can get help to run all tests and finally get proper diagnosis ( private clinics or hospitals with specialists).

I’m looking forward to hearing some advices from you.

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Comments

  • Sandy_123
    Sandy_123 Scope Member Posts: 61,391 Championing

    Hi @maggines welcome to the forum. Have you asked your Dr about these tests? Although I know it's not easy getting appointments.

  • maggines
    maggines Online Community Member Posts: 2 Listener

    Hi Sandy, I asked his paediatrician but she doesn’t think it is necessary to do so because he has Down Syndrome and all what my son experiences is common. Also I heard that NHS save life and not invest mony in expensive test. That’s why we want to go private. We already waited time.

  • Jimm_Scope
    Jimm_Scope Posts: 5,717 Scope Online Community Specialist

    Hi @maggines, welcome to the Scope community! I'm sorry to hear about the tough times you are going through with your child health. I am afraid I don't know much about stories similar to your own. We do have a section of our advice column that signposts various support groups for parents here: Support groups for parents | Disability charity Scope UK

    I hope you get the scans you are asking for your son and get the support you need soon.

  • Mary_Scope
    Mary_Scope Posts: 650 Scope Online Community Children and Family Specialists

    Hi @maggines and a warm welcome to the community!

    It's very understandable that you're seeking support and answers for your son. Based on what you have described, it is also understandable why you are suspicious and keen for more tests to see if there is something else going on for your son. You are being a great advocate for your son!

    Hopefully some of what you have posted will be relevant to other parents and carers here on the community and they will be able to be offer their own experience and support.

    In the meantime, it may be worth reaching out to support groups for parents of children with down syndrome and some support groups for parents of autistic children and exploring your local offer for local support groups.

    Hopefully you will be able to find other parents who have been on a similar path and get some answers about your son soon.

    Hope this helpful, pleas reach out if you would like further support or have more questions😀

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