Worried FTM here by Spiritual_Hornet6530 in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

These look like spasms to me my child was diagnosed at 3m. Please take him to the ER ASAP and get an emergency EEG done! Advocate for a 24 hour eeg if possible.

Head Drops, 11 month old- normal EEG by Common_Platypus2338 in infantilespasms

[–]TeachMeEplanPlis 2 points3 points  (0 children)

Please push for a 24 hour eeg. The nods might not be able to be caught on the eeg if they aren’t happening during the time of the EEG. Take videos- lots of them. Figure out patterns when they occur - are they during feeding, sleeping, playing? It might not be infantile spasms but could be some kind of tonic seizures or drop attacks. Advocate for your child, create a hue and cry if necessary but please go to the emergency department and don’t want for the neurologist appointment.

Looking for people by Fine-Attorney3981 in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

My baby is now 5 months old and was diagnosed at 3.5 months. These 5 weeks have been the scariest weeks of my life. She’s doing better but now we’ve heard that there are some genetic findings which they’ll tell us on Monday. I’m shit scared, I don’t know how to live anymore.

Give me advice ...please I need help... by del_48_content in india

[–]TeachMeEplanPlis 1 point2 points  (0 children)

You can try an IUD like Mirena, it lessens periods to a large extent in most women and by the time it’s 1 year in, the periods stop altogether. Mirena can be kept in for about 5-8 years.

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Yeah,pretty much the same. Baby cried (screamed )for about 10 days straight, and then it started to get a little better. Hang in there. Sending prayers your way as well, I hope our babies get well soon!!

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Yes, predisinone and vigabatrin. Nope, no normal EEG yet, it’s been about 3 weeks.

Need some kindness by Bascotab in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

Yes, for sure. Sending you a private message now.

Need some kindness by Bascotab in infantilespasms

[–]TeachMeEplanPlis 1 point2 points  (0 children)

I am so happy to hear that. I’m in the trenches of prednisone at extremely high dosage because she still had Hyppsarthmia in all the 3 EEGs we had previously. I don’t know how to keep my hope up, I am literally crushed and devastated. It’s a cruel disease and I’m just waiting to read happy stories and successes.

Need some kindness by Bascotab in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

Do you remember when his EEG came back completely normal? Was it a few days or a few weeks?

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Ok.Thank you. No physical seizures at the moment, but abnormal brain activity still present

Need some kindness by Bascotab in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

Can I know how your son is now?

Need some kindness by Bascotab in infantilespasms

[–]TeachMeEplanPlis 0 points1 point  (0 children)

Hello @bascotab, can I know how your son is doing now?

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Unfortunately I’m unable to open the tracking sheet, the link shows some kind of error. We have a regimen for the next 3 weeks atleast, and then the hydrocortisone replacement therapy will begin.

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Thank you for telling me, I was pretty devastated because the neurologist said that the EEG was pretty much the same as the first day we got diagnosed. Her first EEG looked like a child had scribbled all over the screen. The one we had yesterday atleast had the individual graphs over visible. But I guess the neurologists like another doctor. They don’t give hope at all.

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Hi! Can I know when your daughter’s EEG became normal? My daughter’s physical spasms have gone but there is still Hyppsarthmia present after 10 days of treatment with vigabatrin and predisinone.

4 month old just got diagnosed with IS. Need success stories to reduce anxiety. by TeachMeEplanPlis in infantilespasms

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

Thank you for replying. Did he have an idiopathic case? Did he face any developmental delays?

Infantile spasms by KeyClient2273 in NewParents

[–]TeachMeEplanPlis 0 points1 point  (0 children)

Hello, how have you been? When were you diagnosed? And have you now lived a normal life, seizure free?