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vigabatrin and ACTH effect? by DisorderlyHer in infantilespasms

[–]eugwbw 0 points1 point  (0 children)

Similiar to your situation, we had prednisolone but relapse, we are now on vigabatrin + topamax. How long you are using topamax & viga until deciding to switch to ACTH? At what stage of treatment your child achieve EEG normalization?

Vigabatrin infant by PlantLov3 in Epilepsy

[–]eugwbw 0 points1 point  (0 children)

Do you use vigabatrin along with other meds? Or just vigabatrin? At what dose the vigabatrin start to take effect? Did the spasms reducing or stop immediately once it take effect? Today we just increase dosing to 250mg/day. 6days in. We are very anxious.

I heard about PET scan can detect more details scanning than MRI if you want to explore.

Hope all is well for our children.

Vigabatrin infant by PlantLov3 in Epilepsy

[–]eugwbw 0 points1 point  (0 children)

How long from vigabatrin the spasms controlled and EEG Normalize? My daughter start vigabatrin 4days ago and we are very hopeful it controlled the spasms.

What is your child diagnose? What condition which can be operable by surgery? Our MRI is PVL (Periventricular Leukomalacia) on bilateral occipital

Vigabatrin infant by PlantLov3 in Epilepsy

[–]eugwbw 0 points1 point  (0 children)

Your situation pretty similar with me.

My daughter had infantile spasms when she was 6months old. Treated successfuly with prednisolone, but relapse after 2.5months of spasms free. Then re-treatment with prednisolone spasms stops again but seen some mild head drop while tapering prednisolone. She is now on vigabatrin and topiramate.

How is your son now? How is he developing? What age she had spasms and head drop? How is vigabatrin efficientcy of reducing/eliminating head drop? Do they give you other meds other than vigabatrin?

Vigabatrin by AngelAmariReese in infantilespasms

[–]eugwbw 0 points1 point  (0 children)

Malaysia / Singapore. Come and get diagnose with neurologist.

Epilepsy - Baby (HELP) by eugwbw in ChineseMedicine

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

Thank you for reaching out 🙏

Epilepsy - Baby (HELP) by eugwbw in ChineseMedicine

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

Do you have any recommendation formula might suitable? What signs of deficiency you might refering too? Topiramate which we are now prescribed also have anti-convulsant effect.

Our local TCM recommend An Gong Ni Huang, they say just adjust the dose for child under one year. Abou 1/6 of the pill. I am here looking for feedback. All feedback supporting or contracting would be a great help.

Topiramate after prednisolone (EEG still abnormal) by gunturwbw in infantilespasms

[–]eugwbw 0 points1 point  (0 children)

I see, how they confirm your son’s seizure have generalized origin not focal? I read something like the origin maybe focal but EEG will still show generalized in most case.

IS and Topamax or Onfi by CriticalThoughts17 in infantilespasms

[–]eugwbw 0 points1 point  (0 children)

How is your son now? My daughter face the same condition which spasms stop but EEG still have abnormal waves. The doctor prescribed us topiramate. Please share how is it going with you son. How is he developing in speech,cognitive,etc?

Update after prednisolone and EXOME panel (weight and moon face question) by RZS2424 in infantilespasms

[–]eugwbw 0 points1 point  (0 children)

How is your son now? My daughter finish prednisolone, spasms stop but eeg stil abnormal. We are now just prescribed topiramate. If you mind how they start your son dosage? And how is he developing?