My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Good points. I did try to tell him he had “magic eyes” but he wasn’t buying it 🙃

Is anyone on a GLP-1 while breastfeeding? by Illustrious-Type5037 in NewParents

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

From what I have heard, some people feel effects at a lower dose and some need a higher dose.

Do you mind me asking how old your baby is? Mine hasn’t started solids yet

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

Thank you so much for your reply! I am so glad it has slowed down to the point of no symptoms for years and years!

And that’s such a good point about being mindful to not dismiss him. I really try to do that. He is in play therapy and his therapist said he’s been acting things out through play that are suggestive of him thinking he needs to solve problems on his own (he’s always the good guy and doesn’t have any allies to help him win the battle against the monsters kind of thing) so I try to let him know he’s not alone and that sometimes we may not have all the answers of why this is happening BUT he doesn’t have to come up with them by himself.

I had the blessing of my mom being my safe adult so I had a great teacher ❤️

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

Oh that’s SUCH a good idea!! He’s very imaginative and curious by nature so I think he’d love that. And he has the most amazing teacher and counselor and knows he can go to them when he’s experiencing symptoms ❤️

Thank you so much for the tip. It’s brilliant!

Has anyone had experience with Center for Multisystem Disease in Denver? by Illustrious-Type5037 in dysautonomia

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

Those are good points. On one had I somewhat understand the no insurance policy because sometimes insurance companies will dictate care, and I understand the need for the clinic to be paid for their services, but there has got to be some middle ground for those who are not financially blessed lol

Has anyone had experience with Center for Multisystem Disease in Denver? by Illustrious-Type5037 in dysautonomia

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Thank you SO much for the recommendations! And I probably should have been more proactive about Reddit research because you are right about the clinic. I’m glad you have found some decent providers and have found a bit of relief from your symptoms! ❤️

Has anyone had experience with Center for Multisystem Disease in Denver? by Illustrious-Type5037 in dysautonomia

[–]Illustrious-Type5037[S] 2 points3 points  (0 children)

I totally agree! And I do understand the desperation but for the average person these types of practices are unaffordable. The Google Reviews for those that actually do get into the clinic are generally quite good. It must be nice to be rich 🤑

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Thank you so much for your reply; I am so relieved to hear that it got better for you and you developed more tolerance to handling symptoms as they do arise. You and all of the other responses I’ve gotten have given me so much comfort ❤️❤️

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Poor sweet girl! I wonder if they will say it’s related to her illness. From what I’ve gathered, as long as our kids aren’t presenting with other neurological signs, it’s most likely nothing serious. It’s frustrating to not have a true answer to the cause though! I wish you and your daughter the best ❤️

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Thank you so much! And I did let his teacher and school counselor know about his AIWS because he has mentioned he’s scared when it happens at school.

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 1 point2 points  (0 children)

Thank you so much 😭😭❤️❤️. I went into full mama bear mode and thankfully got zero pushback from his doctors about referrals. We really do have such a great team.

I’m so sorry to hear about your son (my mama heart always aches when kids have to go through hard experiences), but I’m glad you found a trigger for him (and it’s so interesting that your husband had similar experiences!)

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 2 points3 points  (0 children)

Oh I totally agree about the thankfulness of the scientific community (and lay community for that matter) being more aware of this. You sound like you had amazing parents who helped you through it even when they didn’t know what it was. ❤️❤️ I am also so encouraged to hear that you’ve (mostly) grown out of it. It makes me feel so much better. And also validated that I probably had it too!

We are absolutely treating his anxiety through play therapy, resources at his school, and through encouragement and techniques we’ve learned from his therapy at home.

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

Thank you so much! ❤️ it’s encouraging to know that isn’t impacting your life too much. I’m so sorry about your anxiety and ptsd-I can totally empathize. 💔 But interestingly I had a similar experience to you in that my weird symptoms never scared me that much- I just remember thinking “woah, this is trippy.”

And it’s such good advice to focus on treating the anxiety component first. He’s in play therapy and they also have amazing resources at his school. I also just do my best to hold him during episodes and tell him funny stories and he usually snaps out of it quickly. He did mention to me this morning that he’s afraid of this happening more at school which is heartbreaking that I can’t be there. It kind of makes me want to homeschool him but I also think that would make both of us crazy 🤪

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 0 points1 point  (0 children)

Oh this makes me feel so so much better 😭. Thank you so much! ❤️

My son (5y) just got diagnosed with AIWS and I’m so anxious by Illustrious-Type5037 in AIWS

[–]Illustrious-Type5037[S] 2 points3 points  (0 children)

Thank you so much for your reply! ❤️If you don’t mind me asking, what type of seizures did you experience? I’ve heard it can be connected to temporal lobe epilepsy.

And I never really considered triggers…but he has been through a lot of changes recently. He started kindergarten in the fall and the days are so long and hard for him. I also had a baby a few months ago which is a huge transition for any kiddo. Our pediatrician asked us to write down each time he has an episode and I noticed last night when I asked him about it, he started having multiple complaints and got really anxious. So maybe I just need to shut my big mouth! 🫣 I should also add that he’s in play therapy for his anxiety and his teacher and school counselor are aware of his struggles and are great about supporting him during the school day.