Beachgem10
Region: US
Friday 15 April 2022 22:26:22 GMT
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Sarha677 :
There is a family on here that has been struggling to get a Dx for a very similar set of motions. I hope the algorithm brings them here.
2022-04-15 22:29:54
304
Amanda Raml :
My daughter was diagnosed with infantile spasms at 4 months old. We where shrugged off as reflex but fought for her and refused to settle for the drs
2022-05-25 10:17:27
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rcal90 :
My baby ❤️Thank you for spreading awareness so that other parents can catch it sooner than we did.
2022-04-15 23:12:57
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Yesterday :
Looks similar to the startle reflex? no?
2022-04-16 03:26:20
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Bosslady :
Thank you for posting about this. My eldest had IS/West Syndrome. it took far too long to get a diagnosis because he was 14mo when they started.
2022-04-16 21:27:59
8
Boymom1213 :
Thank you for spreading awareness. My nephew was diagnosed with Tuberous sclerosis at 6mths due to Infantile Spasms.
2022-04-16 00:12:44
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Melissa 🫶🏼 :
I was a para to a sweet nonverbal girl who started having tics and staring spells so I told her mom and the mom said it was her way of trying to 1)
2022-04-16 05:15:46
4
ktrose34 :
I’m so worried my son is having these. No one is listening. 😞
2022-04-15 23:15:38
2
user8338376370414 :
My son was diagnosed at 9 months. He had them starting at 8 months! He was lucky, ACTH WORKED!!! Thank God!
2022-04-16 01:12:24
23
dmp1960 :
My nephew shrugged his shoulder as a newborn. Dr told her she was just a worried mom. Got eeg it was the worst one the dr ever seen.
2022-04-15 22:38:33
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leah.nilson 🍁 :
My son went through something super similar & I took him to the ped same day. Thankfully it was just Sandifer’s syndrome/reflux, and he grew out of it
2022-04-15 22:43:06
3
Mommy_Butler :
now I'm wondering if I missed something when my children were babies. #motherlyguilt
2022-04-15 23:47:46
182
It’s me Steph :
Are all infantile spasms something parents should worry about?
2022-04-21 01:43:19
0
AreDee :
My nephew has what we were certain was infantile spasms but after an overnight hospital stay they said nothing was wrong. He was just excited. 😳
2023-09-06 02:32:02
1
Maura :
My 3 month old is having foot/leg spasms should I worry?
2022-04-17 10:47:41
1
Shawna McKay :
my daughter has infantile spasms. 8 sec apart, started at 11wks
2022-04-17 01:26:58
2
Rachel :
I son is a year and always flips his head back, I tried googling and nothing. I’m gonna take him in, thank you
2022-04-15 23:43:39
3
Oneofthosekids2 :
My son developed Infantile spasms at 2 months and we recognized it and got and EEG as soon as possible
2022-04-26 21:54:14
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Mostly Victoria :
Oof my kid had sandfiers syndrome. self diagnosed by me after neuro did tests to rule out IS. Such a scary time for us.
2022-04-15 22:55:52
15
hanaka :
Thanks for bringing awareness. I have a TSC kiddo that had IS. The term infantile spasms does not seem like it’s a detrimental as it really is.
2022-04-17 10:47:06
6
peytondarter :
my daughter has these random shakes she does. she’s not cold or anything. we have been brushed off and told “newborn shakes” but she still is doing it at 7 months old. it only last a few seconds
2024-02-26 04:12:08
0
✨Hope for HIE✨ :
STOP pneumonic - See the signs, Take a video, Obtain diagnosis, Prioritize treatment. 🙌
2022-04-16 03:46:24
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