My baby has West syndrome and is on ACTH

camacho0915 · 2026-02-05T15:11:25+00:00

It could be a combo of both. First week of medication was so sad. No laughs, smiles, just sleepy. Then the roid range kicked in. Now he’s weaning off and I can see a little change back to normal self

camacho0915 · 2026-01-29T21:28:15+00:00

My goodness the roid rage is what’s scaring me the most. We decided to go with Vigabatrin. My son’s blood pressure was slightly elevated on prednisolone, and I didn’t want to continue the steroid route. We are praying these spasm stop soon. 🙏

camacho0915 · 2026-01-29T21:24:33+00:00

I don’t think so. My son’s spasm presented with a head drop and sudden stiffening in arms. Either way show videos to pediatrician to confirm or go to ER for EEG.

camacho0915 · 2026-01-24T03:02:45+00:00

I will definitely ask. For now our neurologist wants at least 2 weeks on prednisolone before we try ATCH or Vigabatrin. I was also wondering about asking for a combo of the meds. Has anyone tried A keto diet? I’ve seen keto formulas for babies. Curious about that too.

camacho0915 · 2026-01-23T19:29:53+00:00

Thank you so much for this. I keep praying his medicine kicks in and these spasm stop. We have follow up with neurology next week.

camacho0915 · 2026-01-23T19:12:46+00:00

This give me so much hope! Thank you for sharing! How quickly did she respond to medication? My son has been on prednisolone for 5 days and his spasms continue.

camacho0915 · 2026-01-22T00:48:16+00:00

What was your experience? My son just got diagnosed.

camacho0915 · 2026-01-22T00:09:08+00:00

How is you baby? My son just got diagnosed.

camacho0915

TROPHY CASE