Infantreflux.org | Officially Diagnosed

This topic has 21 replies, 1 voice, and was last updated 17 years, 8 months ago by Anonymous.

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November 25, 2008 at 10:21 am #58969

Anonymous
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On Thursday I got the dreaded call from Sarah’s school: Sarah was found on the floor face first in the class having a seizure. Thankfully I was home and was able to get there very quickly before EMS arrived. Other than a bad headache, a hurt nose and a bit cheek, she was fine and I took her home to sleep it off.

Yesterday Sarah was officially diagnosed with epilepsy and will be starting on anticonvulsive medications after we see the neurologist. It was a sad day for us. We’d always thought that it was something benign that she would outgrow- that’s what we were told- that she would outgrow it by age 3, age 4, age 5, and then age 6. That most kids who have febrile seizures outgrow it. That most kids who have one big seizure do not ever have another one.

Right now we’re trying to accept a new reality. I laugh that I was once worried about reflux meds where the side effects were so small (and I mean no disrespect to anyone in that predicament because it’s all relative and I was there once too). Now we’re forced to put Sarah on meds where the not-so-uncommon side effects can be hyperactivity, exhaustion, inability to focus, decreased learning, school and behaviour problems, liver failure, toxicity, life-threatening reactions, and decreased white cell count and immune response. It’s hard for me to voluntarily do that to my baby.

Please keep us in your thoughts and prayers.

November 25, 2008 at 12:57 pm #58970

Anonymous
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I am so sorry, Lori! I will keep you all in our prayers. I had a friend with epilepsy and in high school she was on the high honor roll, so keep positive and take things one day at a time to figure it all out!

You are in my prayers!

November 25, 2008 at 2:36 pm #58971

Anonymous
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I am so sorry. I will keep her in my prayers.

November 25, 2008 at 5:44 pm #58976

Anonymous
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I am so sorry to hear this Lori! How scary to get a call like that.

I’ve been on an anticonvulsant since I was 21 years old (I’m 30). Mine is probably not as high of a dose b/c it is for a chronic (uncontrollable if not on meds) migraine problem. My life is terrible without the meds. I do have some side effects, but nothing terrible and I’m far better off on them, than off. Not sure if that gives you any consolation or not. I know everyone is different, her condition is different, and Sarah is your baby and this is all SO scary.

Huge hugs to you. You guys are in my thoughts & prayers.

November 25, 2008 at 6:48 pm #58980

Anonymous
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Thanks all for the support.

Jill, I have so many questions. Would you mind if I pm’ed you?

November 26, 2008 at 8:37 am #58997

Anonymous
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Lori, how scary. I pray that the meds will help control the seizures.

November 26, 2008 at 9:27 am #58999

hellbennt
Keymaster

oh lori I teared up reading you post!!!

I, too, will keep you all in my prayers!

November 26, 2008 at 10:48 am #59002

Anonymous
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s&h’s mum wrote: Thanks all for the support.

Jill, I have so many questions. Would you mind if I pm’ed you?

Yes, feel free to PM me!!

November 26, 2008 at 1:12 pm #59005

Anonymous
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Wow Lori, I know this was not the answer that you were looking for. I don’t even know what to say other than hugs to you and all of the family.

November 26, 2008 at 2:00 pm #59006

Anonymous
Inactive

Oh man… I’m so sorry, Lori. You and your family are in my prayers.

November 26, 2008 at 3:31 pm #59009

Anonymous
Inactive

Wow Lori,

I haven’t been on in awhile and didn’t see this until now. Feel free to PM me if you need to vent or just need shoulder. I think I might be able to relate to how you’re feeling.

What meds are they starting you on?

November 28, 2008 at 12:27 am #59037

Anonymous
Inactive

Oh Lisa, I’m so sorry! I can only imagine what you are going through and the fear and worry that goes along with it.

Just a thought, but have you looked into diet and it’s implications on seizures and epilepsy? I have heard of a number of children who seizure in response to certain foods. Gluten in particular comes to mind.

Again, I’m very sorry and will keep you and Sarah in my thoughts and prayers.

November 28, 2008 at 1:20 pm #59041

Anonymous
Inactive

lori, sheri has a really good point about diet—especially when she mentioned gluten.

celiac disease can cause seizures in some children, i don’t think it is a common symptom, but they used to think you had to have a particular set of symptoms to have celiac. one of my kids had no symptoms at all.

if you want to check into it, make sure that they run the right tests. ask for a total Iga serum and a tissue transglutaminase IgA—(Ttg IgA for short) a Ttg test is the most accurate test, but you need to know if IgA levels are normal to get an accurate reading.

i’m sorry you have one more lousy thing to deal with!

November 28, 2008 at 3:12 pm #59044

Anonymous
Inactive

Hugs! I’m so sorry that you and your family are going through this. My best friend in lower school was on medication to control her seizures and she was one of the smartest. I know it takes time to digest such news so if you ever need to vent, we’re always here to listen.

November 28, 2008 at 3:57 pm #59046

Anonymous
Inactive

Lori,

iam sorry to read this sad news. It sounds scary. You, your baby and your family are in my prayers. Big hugs.
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