Cora Mack - Junies mama 💛
Region: GB
Thursday 29 October 2026 09:24:41 GMT
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HRMC :
Hey have you had her tested for PANS pandas it is misdirected immune response where antibodies target brain structures (specifically the basal ganglia) after an infection, leading to localized inflammation it can cause sudden movements but is it not recognised by the NHS so need to be assessed privately 🤍
2026-10-29 11:10:18
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kaylizem :
Do you know what type of genetic tests have been done? Has she had whole genome sequencing done? You are well within your right to ask for a second opinion from a different neuro team. Birmingham or Alder hey are probably your closest large children’s if your local is Nottingham
2026-10-29 10:47:57
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Jorose :
could it be tourette syndrome..ticking
2026-11-07 22:42:49
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Louise Shuel :
I hope this reaches the right person that can help
2026-10-29 19:42:21
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Livvy :
Needs more significant EEG can even have a few days. I understand genetic testing has been done, was there absolutely no change? Did they check spine as well as brain? Have they checked the veins in her brain? I forgot the test for this but I remember seeing a similar movement issue and it turned out to be a issue in the veins.
2026-10-29 14:43:55
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Laura Isted :
I know this seems like a wildcard but it looks a lot like Tourette’s tics? Is that not something that’s possible?
2026-10-29 17:26:14
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Nicole Lauren Blake :
Have they looking into Sandifer Syndrome?
2026-10-29 14:46:37
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Jo12345 :
I don’t have any information but I just wanted to tell you , You are doing a fantastic job advocating for you child! Don’t be to hard on yourself and remember you are doing your best and nobody can do better than their best. I really hope you have answers soon 🥰
2026-10-29 21:18:43
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Gianna Brunetti :
Cora I’m so sorry, it’s heartbreaking to watch 😭 let’s hope social media can do its thing.. fingers crossed! Big hugs to Junie and you all.. xx
2026-10-29 19:36:34
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Corina :
I’m certain another mum will have a child who has experienced this and will be able to help you and your daughter ❤️🤞🏼
2026-10-29 16:04:38
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Charlotte :
My son has these, his diagnosis is atonic epilepsy. Called drop seizures.
2026-10-29 18:35:59
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dollydeadlegs :
Could it be ticks ❤️
2026-10-29 22:07:39
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gem3019 :
How can they say it’s not urgent when they don’t know what it is? And with that many seizures! 🥺 😡
2026-10-29 21:10:53
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Shannon Bedford :
has she had a prolonged eeg? my son was having eegs that was coming back fine untill he had a 24 hour one that helped massively towards finding him a diagnosis x
2026-10-29 22:04:40
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AitchyEm :
look into PANS/PANDAS and look at @thistrippyhippie on IG x not saying it is this but certainly worth looking into x🤗
2026-10-29 13:38:20
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lucee446 :
I’m so sorry for going through this, don’t feel bad, you’re being an amazing mum by exhausting all your options to get her help, I wish you and junie didn’t have to experience this ♥️
2026-10-29 16:11:05
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MollyM :
Gosh I am so sorry you are going through this!! The videos as a stranger are distressing and concerning let alone for you with it being your own child 💔praying for you to get answers soon xxx
2026-10-29 13:40:04
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Kirstie :
I would personally request a 72 hour plus EEG, maybe even full telemetry. Definitely seems like some kind of seizure. My son had infantile spasms as a baby and I don’t think it’s that, especially if her development is still good, BUT if she’s not having the episodes during the EEG then it might not show. I’m surprised they haven’t done that! Good luck xx
2026-10-29 11:59:02
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Helen :
Awww I’m so sorry you aren’t getting any answers. Such a gorgeous happy little girl. I really hope you get the answers/treatment asap
2026-10-30 13:38:10
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Chestercopperpot :
Oh god, my heart for you. I am so sorry. Please someone else this baby and her mummy xx
2026-10-29 19:46:49
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Aimee Ritchie :
My son‘s head drops all of a sudden but he’s diagnosed epilepsy and movement disorder that’s why I say is that a drop seizure
2026-10-30 00:59:12
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Hayley Griffiths :
I have a son with epilepsy and dystonia. I would say from my experience it was more dystonia or movement disorder. I think you’re doing the right thing going private. Good luck x
2026-10-29 23:13:55
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PumpkinTheMenace :
Infantile spasms. looks exactly like my sons epilepsy at that age. Have they done a EEG and checked for hypsarthmia x
2026-10-29 20:01:02
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radio_gaga :
Retrocolis can present just like how your daughter’s symptoms do, might be worth looking into even if it’s just to rule it out? Hope you get some answers for your little girl very soon xx
2026-10-29 19:06:48
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Grunge Mother 🔮👽🦇 :
My son would do this. He would fling his head back and forth. He was diagnosed with Chiari malformation and autism.
2026-10-29 22:52:20
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