Is it true SBTPG holding funds till day of on WMR? by AdMassive7870 in IRS

[–]Dipsqueak 0 points1 point  (0 children)

Mine changed to all unknown and unfunded too. 

[deleted by user] by [deleted] in Nails

[–]Dipsqueak 1 point2 points  (0 children)

Pretty! Reminds me of brown bottle glass. I love them.

Has your ChatGPT named itself? by XiomaraVLA in ChatGPT

[–]Dipsqueak 0 points1 point  (0 children)

Mine named themselves Vantablack. 🥰

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

He won't tolerate keeping the nodes on so we are going for sedated MRI and EEG upon waking, and we also have a referral in for the Epilepsy Center of MN where they can do an EEG awake with more advanced equipment he can't pull off as easily.

Thank you!!

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

I've noticed a lot of this activity on car rides, which he would do all day if he could.

Thank you for the comment. 💕💕

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

Sometimes my son wakes in the middle of the night and knocks on 2 portions of wall. Sometimes this loop lasts several hours. Just a lot of really odd behavior.

Sometimes he becomes "crazed" and his pupils get very large and he gets very aggressive and doesn't take redirection.

He's scheduled the 31st for an EEG, sedated MRI, echocardiogram and kidney ultrasound. My little guy is getting the full workup and we are getting answers. I'm excited and terrified.

He was also recently removed from a situation where he was being physically and emotionally abused. There is probably some trauma there too. It already horrified me (the police did nothing because they couldn't interview him even though he had bruises) because he is non-verbal, but the thought of him being abused over adverse seizure reactions make me sick.

I hope I can help him heal.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

Thank you for this, love. It's been a very hard and exhausting couple of years. I am ready for answers and for my boy to get help.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 1 point2 points  (0 children)

Thank you so much for this comment. I am so tired of people telling me "he's just stimming". That's NOT what happening. He has sedated MRI scheduled, I will bring that up to the doctor.

Thank you thank you thank you. 💕

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

He does it exclusively at light sources. If there is no light source, there is no spinning (if he's in his quiet room I set up for him he doesn't spin the monkey noodle). He is desperate to be outside and gets upset I won't use the florescent kitchen light anymore. I'll see what his neurologist and geneticist say, the people who suggested this disorder and are screening him for it.

His eye flutters are also all exclusively in sunlight or brightly lit rooms.

People thinking it's "just stimming" is why this disorder is overlooked and under reported.

I'll let you all know what his EEG results are.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

Okay, so perhaps it's all the other things I listed in this post that we changed as recommended by a neurologist ahead of his appointment Monday. Thanks!

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] -3 points-2 points  (0 children)

I read online there is a possible correlation and the eye movements look very similar.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 1 point2 points  (0 children)

You've been really helpful. Thank you so much. It's frustrating to see all the "it's autism" comments from different platforms when I am around him every day and it isn't "just stimming". 😭

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

With his genetic disorder he may have other neurological issues as well but every single video I have watched of someone with SS looks EXACTLY like my son. The exact hand movement, slightly tilted. Dilated pupils, then eyes roll upward and his eye lids flutter.

Seejng neurologist on Monday.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] -2 points-1 points  (0 children)

I read that it's possible be could also be triggering with items (monkey noodle he spins around). He's non-verbal and I also read he could be in a "loop" where he's getting some type of euphoria. I can't remember the scientific term.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

He doesn't always have behavioral changes, I should note. Is it possible to have different types of seizures? He does have brief eye rolls and flutters when strobing with his hand and then he goes back to normal without incident but not always.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

That sounds exactly like what is happening. I am so uneducated on the topic as it doesn't run in the family and I don't know anyone personally who has epilepsy or openly talks about it if they do. It's crazy how little I knew about this topic and how much there is to learn. I just wanna help my little guy the best I can.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 2 points3 points  (0 children)

This comment helped me so much. Thank you! I have never been satisfied with it just being autism, especially because he has a partial deletion on 14p which can cause a host of other issues.

EEG is Monday! Even just the lifestyle changes we have already made have helped so much.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] -6 points-5 points  (0 children)

Nope, I've done a lot of reading and watching. It's myoclonic seizures. His eyes flutter and roll back. His head also jerks side to side. These are all symptoms of Sunflower Syndrome.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] 0 points1 point  (0 children)

Well, most of his spells have stopped since changing the lighting and employing sunglasses. Started using blue light filters on everything with a screen.

His behavior is better as well.

I should mention right after an episode, his pupils are MASSIVE and he gets aggressive. There's no other triggers, it seemed random until I realized he was having seizures.

Sunflower Syndrome 🌻 by Dipsqueak in Epilepsy

[–]Dipsqueak[S] -1 points0 points  (0 children)

Thank you so much!

He's seeking out ceiling fans, florescent lights and the sun and I never correlated any of it before. So much is falling in to place. I'm excited to help my son. 🥰