Siera

Our girl Siera was born 9 Sep 2010, we had a normal pregnancy and birth (c section) and presented no problems, until aged 11 weeks when Siera started having Infantile Spasms. MRI showed she has Polymicrogria and also had a
rather large tumour which was removed in an 8 hour op at aged 4mths, one of the hardest days of our lives!

Siera is now 20 Months, has been on many meds, currently weaning off Vigabactrim, is on Topomax and Phenobarb, the
spasms prove hard to control. Only spasm free time she gets is when on steriods.

She is a happy little girl, beautiful and smily, and she tries very hard.She is very vocal but does not talk. She is not yet sitting unassisted but has good head control and is getting stronger every week.

She has OT, water therapy and we have good support from Neuro and the docs. We are also considering the Keto diet once it is available to us.

It has been a long hard journey, but Siera is the best thing that has ever happened to us and we love her very much. We take one day at a time and celebrate every achievement.

We are working on having our second child and hope to give Siera a much wanted sibling. Genetic docs have told us low chance of a sibling having the same problems, I very much hope they are right, we will be having MRI on next baby for sure.

I am her voice, she is my heart!

I hope to hear from anyone that wants to share, please do email me.

Thank you.

Similar to many other families we had no idea anything was wrong with our girl until age 11 weeks when she has her first spasm while sitting on my lap. After 2wks in hospital and MRI’s we were told she had polymicrogria ( we still didn’t know she had Aricardi until aged 16mths).

Siera has up to 6 infantile spams daily, have tried many diff combo’s of drugs but they continue to prove hard to control (especially when teething or sick has alot more breakthrough)only spasm free time is on high doses of steroids. She is on the waiting list for the Keto diet.

She also had a brain tumour removed at aged 4mths (another 2wks in hosp)I’ve been told that these are common Aicardi girls so am interested to know if anyone else has been through similar.

Siera is a strong happy girl most of the time, she tries very hard, she is not yet sitting unassisted (now aged 20mths), she has weekly OT, hydro therapy and we have standing frame and lots of other great tools to help her get stronger. She loves being around other children and has close relationship with her daycare friends.

No signs of spine problems as yet. She does have lesions behind her right eye and some freckling behind her left but she can def see, tracks well and loves watching the computer screen. Does not speak.

Genetic doc has given us the go ahead to have another child, says low chance of this happening again, interested to know if other families have gone on to have more children without any problems.

Siera is my angel, my gift in life, I love her with all that I am and continue with her in her journey each day and try all I can to make her life happy and comfortable.

I am her voice, she is my heart.

Would love to hear from anyone that wants to email, will reply for sure.

Kat 🙂