I was about to log off when I saw your post: Paulina and you are sure going through a lot, but you seem to have good care for her. I wish you all to be strong and happy through all of this and hopefully the seizures will taper off as she gets older.

thanks for the update, it sure is good news that your friend's son got his transplant.

Thanks for the update Anele - on Paulina and your friend's son also. I am sorry Paulina is still having health issues. My prayers will continue for her. Please do let us know how she does!!

tina

My goodness, so sorry Paulina is having such a difficult start in life... I'm sending many, many prayers and heartfelt wishes your way.....

My thoughts and wishes for you and Paulina to get past this hard time . I am so sorry you have had so much to bear recently and I am glad that there appears to be such excellent medical care for her.

Congratulations to your friend and her son and may his recovery be without complications. c

I am so sorry, Anele. I think one of the biggest challenges we can face is one of our children is sick, especially with something chronic. I will be praying for her and also for you and your husband. Make sure that you 2 take the time you need to deal with this together.

I want to add my good wishes for you and for sweet Paulina. I do hope she outgrows the seizures, as many children do. Hugs.

Anele, I am so sorry that Paulina is going through so much, as is your entire family. As you said, modern medicine is amazing and, hopefully, these setbacks will be just a memory.

So happy to hear about your friend's son!!

Anele, how old is she now? My neighbor's son started having seizures when he was around 6 months old. By pure luck, she was told to take him immediately to Johns Hopkins where he was put on a very very strict diet - can't remember what it entailed but I think it was a very high fat diet. Anyway, after being on the diet for something like six months (?) he was completely cured of the seizures. He is now nearly 3 y/o and hasn't had a seizure since. The key is catching it early enough and getting them on the diet right away. They actually had a special about it on TV and his family was interviewed. If you are interested in knowing more about it to see if it might be an option or something to look into for Paulina, I can get more information from her or put you in touch with her.

In the meantime, my prayers are with your family.

I found this by doing a google search on "hopkins diet for infant seizures" and this is the diet that her son was on when he was a baby. I quickly skimmed the article and it mentions being on the diet for 2 years, but he definitely wasn't on it that long. He wasn't even on it for a year.

I do know that they believed that because he started it almost immediately after discover of the seizures that it was considered more effective. He'd been having the seizures for a little while, but they weren't severe so my neighbor didn't realize they were seizures (he'd stiffen up and throw his arms back or something like that).

Anyway, I hope this information is useful to you.

Here is a link that might be useful: Ketogenic Diet

OMG, you guys have all been through so much!!! I'm so sorry things like this keep happening, what a strong little girl she must be, a real fighter. Your in my thoughts and prayers too so please continue to keep us posted.

I'm also sending good wishes to Paulina and to you and your family. You have all been through so much, I'm hoping for continued strength for you.

Will keep little Paulina in my prayers.

My step-daughter also had seizures at a young age, but not until age 2. She also was put on the ketogenic diet, recommended by her doctors at the Mayo Clinic in the mid-90's, and it did seem to help. She didn't outgrow her seizures, but the ketogenic diet is often successful in helping minimize or manage them for a lot of people. Not sure if Paulina's situation or even her age calls for it, but it may be something to ask about.

Good luck!

Thank you so much. I am feeling pretty stressed out not knowing. I have not found anything about what she has. Seems unusual. I am not going to continue looking, though, because I think it will be too scary at the moment.

My husband just showed me his FB status. I am a little shocked. He wrote that the tests came back normal. I am at a loss for how he did not understand that he did not "get" that the EEG was NOT normal. (He was not with me in the hospital, so I told him over the phone originally.) I had to break the news to him when I read his status. My mom argued with me several times about this today, saying, "Maybe it was just her reflux!" I explained to her that perhaps it was but regardless, her EEG was NOT normal. I do not like this reality, either, but it doesn't change the truth.

4kids and kimberly, thank you for the diet information. I will definitely bring that up. She is 6 months old now, not any solids at all. I also read that sometimes people are vitamin B deficient and that makes a difference, too. So far she has "only" had 2 episodes (1 would not be too big of a deal but 2 is more significant) so I am hoping that will be it, but I guess we will find out more with the next EEG.

Thank you all again. You are all very, very comforting.

(((anele and Paulina and family)))

fourkids, kimberly, you are part of what makes this an amazing place; someone here always knows *something* that can help, about whatever is happening to anyone. We all send energy, prayers, light, but darned if *substantive help* doesn't appear from this wonderful group of men and women. Such a community of learning and aid.

I can only join the chorus of energies coming to little Paulina...and to you, as to have to be strong for everyone, anele. I do hope that your mom and husband can be strong for *you* sometimes, too.

I'm praying for the best possible outcome for Paulina.

Anele, little Paulina is so lucky to have a truly loving mom who takes such good care of her! You're amazing!

Sending positive energy your way, and hoping you have a chance to relax and have a break very soon! Thanks for keeping us informed.

Thank you so much for your amazing support. We now have an appt with a neurologist that is considered to be one of the best in the area. They are getting us in by next week, so I feel good about that.

Not exactly fun to be considered a priority by a neurologist, but it will be good to get answers.

Thanks for posting about the Dr.'s appointment. That is great news...a visit with a specialist, ASAP! Please let us know how it goes when you have a chance. Lots of prayers, positive energy, loving thoughts & good wishes, are being sent your way! You can count on it!

I'm sorry to hear your guys are still going through such a tough time right now. I will continue to pray Paulina makes a complete recovery!

Not a thing that I can add that hasn't been said above, you just stay calm and only do what you need too do. You know you have so many angels here thinking and praying for you and the family. We hope all will be well soon.

Anele-

I am so sorry you are going through this. There is nothing more scary in the world than your child's health being in jeopardy.

I have seen a fair share of babies with seizures and we often never find a cause for them. The neurologist I work with says they often go away by the time the babies turn 1.

Saying lots of prayers for your little munchkin that whatever it is, it will be treatable and she will grow out of it.

Stinky, Shee, and Susan, thank you very much. I feel less alone with your support!

Polly, that is very comforting, to know that you have seen this before and that it is likely they will go away. I think my biggest fear right now is what if they get worse, mean some sort of developmental delay is on the horizon (she is completely fine right now), etc. My friend who has a child with autism told me "I don't mean to scare you, but WATCH OUT. My son was on track until 18 months."

I am having a hard time getting informed about this so that I don't read scary things (and it's pretty easy to find the scary stuff) but gather enough knowledge to have a good conversation with the doctor. When I've researched issues ahead of time, I feel like I get a much more comprehensive response because I have a better understanding of information given, know what questions to ask, etc.

Ultimately I am trying to be positive in that no matter WHAT the result, we will have as normal and nice a life as possible.