Infantile Spasms

Hi D.,
My name is J. and I have a 13 month old with hypotonia that we first discovered when she was 6 months old. I know how scared you are right now. I can't give you any info on infantile spasms but what I can encourage you with is to NOT google search it on the internet. My daughter has been having a lot of testing since this all started and her geneticist told me that 70% of the medical info you find online is incorrect. So save yourself there. Take a deep breath and try to just look at this one step at a time. Did the hospital refer her to see someone for follow up? Start there. I know that it is very difficult to not worry right now, if you are a believer my best advice is to pray, cry out to God and let Him help you.
I hope your little one is doing better and I pray for healing and peace in your home. Hang in there.
J.

Please let everyone know what Infantile Spasms are for the ones that don't know or have never heard of it.

Thanks and my thoughts and prayers are with your baby girl!

Hi D.,
This may sound crazy, since you're probably drowning in all kinds of medical advice, but you might see if nutrition has any answers for your daughter's condition. While switching to organic and all-natural foods is a step in the right direction, adding something called glyconutrients takes it a step further. I know of someone whose child had seizures at a young age (like early elementary years) and was seizure-free after taking glyconutrients. If you're wondering what glyconutrients are, I can certainly send you some info and web links, or just talk to you. In a nutshell, they are plant-based sugars (like the active ingredient in aloe vera) that the human body uses for cellular communication.
I know, you may think this is just crazy information, but I really, really think it's worth looking into. I think it could help your daughter a lot.
Please email me so I can see how to help.
M.

I can honestly say, I know what you are going through. My son was diagnosed with infantile spasms at 8 months and is now 15 years old. I wish I had a positive story to tell you about but if you have questions please feel free to call or email me. Please know, if and when you are ready to talk or need someone to listen, I am here. I do know every child with infantile spasms is very different and have very different outcomes. I moved here 3 years ago from Phoenix and I did know families there with children who were very high functioning. I sometimes attend a parent support group at Scottish Rite Hospital in Dallas and I've copied over the information. I strongly suggest you attend as this really provided me with other ears to listen and support. Also, if you have questions regarding a good neurologist, tests, or like you had mentioned, wanting to talk to another mom with a positive outcome, this would be a great place to start.

Dallas Parent Support Group
Dallas, TX
6:30 p.m.
Third Thursday of the month

For parents of children with epilepsy.

Epilepsy Foundation of North Texas
(at the foundation office)
6300 Harry Hines Blvd., Chase Building, 12th floor # 8838
Dallas, Texas 75390
Bi-monthly meeting 6:30 pm-7:30 pm
Facilitator: Sandra L. Krantz, APRN-BC ###-###-####

I hope this helps, Patsy

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