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NDR....Amy Update....>>

Posted by Saucy Suwi on June 14, 2026, 5:10 am

It's now been six long months since Amy became ill with Down Syndrome Regression Disorder (DSRD) not that I knew it was that at first, I had never even heard of it, it's pretty rare. It started with her seeing and hearing people that weren’t there, saying they were trying to do bad things to her and often she was scared witless. She would shake could not eat or drink, could hardly speak just a whisper, often could not move, could not even go to the toilet. There is more but you get the idea I'm sure.
Went to the GP and he sent the mental heath team to see us, these are in two sections (not sure who or why) anyway first lot had no idea what was going on so said they could not help. Second was a mental health nurse called Sam and he was great, although he did not have a clue how to help he said he would try. A week or so later I had not heard back from anyone so contacted Sam's office and spoke with his manager Emma (he was away) while taking she came across information on DSRD, I googled it while we were still talking and Amy has all but one symptom (about 20). It was pretty clear this was what it was but being so unheard off even by doctors. I knew help was going to be hard to find. She gave Sam the details and he started looking into it. I read everything I could find, joined FB groups, contacted the Down Syndrome Association and went back to GP (who has been brilliant). Amy needed a Psychiatrist and a Neologist, she needed to go on anti psychotic meds and a CT scan also an MRI. She has had more blood tests than you can swing a cat at! Managed to get a CT scan after a few false starts, all OK. It has taken the best part of 5 months to get a psychiatrist (Dr Bradley) who actually knew what DSRD was. By then I had found a specialist at Cambridge University collage hospital a Dr Zaman who Dr Bradley had already had contact with, he has two patients with DSRD. So he came to see us and agreed most likely DSRD and proscribed meds BUT first Amy needed the MRI before she can start taking them. GP now with support from Dr Bradley at long last manage to get Amy into hospital as an emergency. First night Amy got very distressed so we went home for a couple of hours the next afternoon so she could see Sophie. On day three we got the 'emergency' MRI... it was fun! Amy had to be sedated as it takes a while to do the scan and she would not be able to stay still. So meds given and off to sleep went Amy, an hour or so later we head for the scanner, Amy wakes up. I get her back to sleep and repeat a few more times! In the end I get her back to sleep and scanning started, but when they added contrast she woke up again and would not go back to sleep so I said they would need to give her more sedation. They phone the ward who brings more sedative and eventually Amy is asleep again and they could finish the scan. Boy those machines are LOUD!!! Had earplugs but then I guess you are not meant to stand next to them for an hour??? Amy the slept for another 3 hours. Eventually I got her to wake up and eat a sandwich and a couple of drinks. Her blood pressure had dropped so we then had to wait for that to go back up. THEN, we could go home. Next step wait for the MRI (all clear) reports to go to GP and Dr Bradley so we can start medication. The meds will be a slow proses, could be many months to find to right level. Amy will never be cured but life might be liveable again for her one day? Through all this my Sophie has been with her, a massive help and support I honestly do not know what we would have done without her. I'm Amy's mum it's my job to be Amy's carer 24/7 but it's not Sophie's job to give up her life to care for her sister, but she has and not once has she complained about getting up in the night if she hears Amy before me. Not once has she hesitated at wiping her bum or going without because I need to be with Amy. My mum has been a great support too, the last few weeks sitting with Amy a couple of times a week if she is having a good afternoon so I can spend some time with Sophie. There is only the four of us so Amy's support bubble is pretty small.

Photo from Amy's birthday in Brighton Oct 2025

You need to stay strong to manage so much, Prayers to you & the family for a calmer outlook....

Posted by Cecilia in CA USA on June 15, 2026, 10:02 pm, in reply to "NDR....Amy Update....>>"

Thank you, Cecilia!

Posted by Saucy Suwi on June 16, 2026, 5:51 am, in reply to "You need to stay strong to manage so much, Prayers to you & the family for a calmer outlook...."

Praying to the universe for comfort and serenity for all of you. Sophie is such a treasure >>

Posted by Steph in ma on June 15, 2026, 11:20 am, in reply to "NDR....Amy Update....>>"

How wonderful that she is so thoughtful, helpful and loving. I really hope the doctors can help Amy and that life will improve. *hugs*

Thank you, Steph!

Posted by Saucy Suwi on June 16, 2026, 5:50 am, in reply to "Praying to the universe for comfort and serenity for all of you. Sophie is such a treasure >>"

Thinking of you all and hoping for a positive outcome. Hugs.

Posted by Judie in Montreal on June 15, 2026, 8:57 am, in reply to "NDR....Amy Update....>>"

Thank you, Judie!

Posted by Saucy Suwi on June 16, 2026, 5:50 am, in reply to "Thinking of you all and hoping for a positive outcome. Hugs."

It's great that you found her illness. Sending every powerful positive feeling your way..msg

Posted by Anika on June 15, 2026, 7:32 am, in reply to "NDR....Amy Update....>>"

now that they know what it is she gets the right dosages and the care team stays strong.

Thank you, Anika!

Posted by Saucy Suwi on June 16, 2026, 5:49 am, in reply to "It's great that you found her illness. Sending every powerful positive feeling your way..msg"

Sending big hugs and prayers your way. I hope everything goes well.

Posted by lovindollz on June 14, 2026, 5:25 pm, in reply to "NDR....Amy Update....>>"

Demetria

Thank you, Demetria!

Posted by Saucy Suwi on June 15, 2026, 5:07 am, in reply to "Sending big hugs and prayers your way. I hope everything goes well."

Hugs, prayers, & thoughts are with you all...

Posted by Marla Gribler on June 14, 2026, 2:20 pm, in reply to "NDR....Amy Update....>>"

Thank you, Marla!

Posted by Saucy Suwi on June 15, 2026, 5:07 am, in reply to "Hugs, prayers, & thoughts are with you all..."

Never heard of this Disorder, but Amy is so lucky to have her protective family...m....

Posted by Karon in VA on June 14, 2026, 12:52 pm, in reply to "NDR....Amy Update....>>"

So awful that this has appeared out of the blue with so few experts in the know. Sounds like you have been a good detective, and hoping all will quickly be under control soon!

Thank you, Karon!

Posted by Saucy Suwi on June 15, 2026, 5:06 am, in reply to "Never heard of this Disorder, but Amy is so lucky to have her protective family...m...."

Hope things get better. Sending hugs.

Posted by Nilsa on June 14, 2026, 11:33 am, in reply to "NDR....Amy Update....>>"

Thank you, Nilsa!

Posted by Saucy Suwi on June 15, 2026, 5:06 am, in reply to "Hope things get better. Sending hugs."

Thinking of you. You all have been through so much.

Posted by Arnie in FL on June 14, 2026, 11:01 am, in reply to "NDR....Amy Update....>>"

Thank you, Arnie!

Posted by Saucy Suwi on June 15, 2026, 5:05 am, in reply to "Thinking of you. You all have been through so much."

My heart goes out to u & yours. Transmitting my empathies. Virtual hugz

Posted by Daphne on June 14, 2026, 10:30 am, in reply to "NDR....Amy Update....>>"

Thank you, Daphne!

Posted by Saucy Suwi on June 15, 2026, 5:05 am, in reply to "My heart goes out to u & yours. Transmitting my empathies. Virtual hugz"

I'm so sorry. I hope you can find some help. Keep us updated. Hug Sophie!

Posted by Merce on June 14, 2026, 10:17 am, in reply to "NDR....Amy Update....>>"

Thank you, Merce!

Posted by Saucy Suwi on June 15, 2026, 5:04 am, in reply to "I'm so sorry. I hope you can find some help. Keep us updated. Hug Sophie!"

I'm so sorry for what you have been going through. wishing you the best possible outcome.

Posted by Shane in MA on June 14, 2026, 9:42 am, in reply to "NDR....Amy Update....>>"

Thank you, Shane!

Posted by Saucy Suwi on June 15, 2026, 5:04 am, in reply to "I'm so sorry for what you have been going through. wishing you the best possible outcome."

Sorry you all have to go through that. Hope with the diagnoses and treatment things can improve.

Posted by Angel on June 14, 2026, 9:31 am, in reply to "NDR....Amy Update....>>"

Best wishes.

Thank you, Angel!

Posted by Saucy Suwi on June 15, 2026, 5:04 am, in reply to "Sorry you all have to go through that. Hope with the diagnoses and treatment things can improve."

Sending lots of love and support. Will keep all of you in my thoughts.

Posted by Queli on June 14, 2026, 9:22 am, in reply to "NDR....Amy Update....>>"

Thank you, Queli!

Posted by Saucy Suwi on June 15, 2026, 5:03 am, in reply to "Sending lots of love and support. Will keep all of you in my thoughts."

Sending healing thoughts. Hopefully with a diagnosis you can get on track. Stay strong! Hugs.

Posted by Kathy M. in CO on June 14, 2026, 6:09 am, in reply to "NDR....Amy Update....>>"

Thank you, Kathy!

Posted by Saucy Suwi on June 15, 2026, 5:03 am, in reply to "Sending healing thoughts. Hopefully with a diagnosis you can get on track. Stay strong! Hugs."

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