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Post by ballerinamomma on Feb 5, 2013 15:36:38 GMT -6
Thank you ladies.
Cissy- I REALLY appreciate everything you posted. Thank you for the encouragement and the information. The MRI is the scariest to me right now.
So far, I haven't heard from the dr! Thanking God! DD has had 3 episodes today. Sometimes I wonder if this is vision or anything else. I'm looking forward to getting answers on Thursday.
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Post by megan1201 on Feb 5, 2013 15:51:54 GMT -6
How scary!! Lots and lots of prayers for your baby girl and your family.
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Post by sarahisis on Feb 5, 2013 16:19:23 GMT -6
I hope everything turns out ok... just wanted to add that I had a friend/ coworker quite a while back whose infant son had started having seizures because of a vitamin b deficiency and electrolyte imbalance. Dd was just very sick so I wonder if that has anything to do with it.
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Post by cissy on Feb 5, 2013 16:22:50 GMT -6
Sometimes there are triggers to the seizures, you can see if they happen at certain times, places or while doing certain things. My 7 yr old has more seizures while hyperventilating, if you hold a kleenex infront of him and tell him to keep blowing on it so it doesn't stop moving, every single time there is a big seizure while doing that, his are also worse if it is too hot and if he is hungry. My 4 yr old, well his kinda were happening all the time and we havent' seen any sort of triggers yet. Floresent lights, strobe lights can cause them, we have no floresent lights in the house we changed them all out and he is young enough that strobe lights do not cause much issue.
It is hard not to freak out about it. If and Once you have a diagnosist you will do everything you can to help out, go right ahead (I still do not let my kid go places without me) and freak out all you want.
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Post by ballerinamomma on Feb 5, 2013 16:33:54 GMT -6
Sarah- I mentioned her Rsv to the dr last night and she said to be sure to mention it on Thursday too! Thank you for the reminder!!! Cissy- I will keep an eye out for any triggers. Right now, she literally just rolls her eyes back and it's over within 3 or 4 seconds, if not sooner. They seem to happen right before nap time. Thank you Megan for prayers
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Post by ReneeW on Feb 5, 2013 17:17:37 GMT -6
Prayers for your family, Ballerina.
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Post by jrose on Feb 5, 2013 18:03:51 GMT -6
Sending prayers and hugs
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Post by betherin on Feb 5, 2013 20:39:38 GMT -6
How incredibly scary for you! Sending lots of prayers your way!
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Post by ladyandrearose on Feb 6, 2013 3:28:15 GMT -6
Sending prayers!!!
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Post by sharon on Feb 6, 2013 5:36:05 GMT -6
Definitely saying a prayer! That sounds so scary. I'm glad you have Cissy to share her experiences with you. Hang in there! And please keep us updated!
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Post by momof3anddog on Feb 6, 2013 8:51:27 GMT -6
Hang in there; I didn't get time to read all of this thread and responses carefully; So if I repeat someone else's stuff sorry ahead of time; Seizures can be serious; But they can also be as a result of something else that is very transitory and will go away; RSV, high fevers, dehydration or an electrolyte imbalance/dehydration from getting over RSV, or a secondary infection during/after the RSV, could all be "just temporary" response reasons for seizures during RSV and after RSV.
FYI -- At 9 months old(technically 6-7 months as born almost three months premature - so pretty much the same age as yours) one of my twins got a bad summer cold; Nothing big for most other people's - 9-month-old infants -- other than slightly cranky baby, etc. ; I knew something was seriously wrong as my infant was not acting right with 12-24 hours of coming down with it; Took him in to his Pediatrician right away and basically told me I was being overprotective mom and probably just had a viral cold; Left peds office, slightly frustrated, came home, put him in high chair to feed lunch - and right in front of me, eye's roll back, full-blown convulsive seizure that cannot get him unstrapped from chair he is shaking so much; Take him immediately right to Children's ER; Get there pretty much the same story as yours - standing in line with bazillions of other parents and getting blown off; He started to turn grey and blue in my arms; Receptionist got angry and got a nurse as they kept telling her I had to wait and she didn't think that I should; Other Somali family behind me in line got scared looking at him in my arms and started to try to get help too; Got him in with multiple doctors and nurses hoovering over him; They say he looks fine to us and you are exaggerating; Boom; Another one happens in front of them and then they start scrambling as he isn't responding to nebs they are going him; They realize that he has a fever that is starting to fast rise in front of them (just then not before), viral cold has gone beserk in a few hours, and one lung is filling with fluid and collapsing and other one is in danger of that; The doctor looked at me and said, how did you know he was so sick -- you can't hear the wheezing yet until now in his chest??? I can see it on the portable X-RAY we just did, but nobody would have even seen that probably a few hours ago; I said because I can see my "normal" mellow twin is doing things he doesn't do and his eyes don't roll back like that EVER and he doesn't shake like that EVER; I can feel that something is wrong as his breathing is off in a big way every so often, It does't feel right through my hand off and on; It hasn't for a few hours; They shut up and admitted him; They ran lots of tests on him; Then later they told me that he had an RSV-like summer virus that was going through the area like wildfire and kids, especially little ones, were getting extremely sick, some dying; So even though "out-of-season" for RSV - it was like that for him and others.
So you are in the right place; By the way, to the best of my knowledge after that brief period of 1 week in hospital where I thought he wouldn't make it, he got stronger, left and never had a seizure again.
So don't minimize the RSV. Lots do. It's serious. Sometimes it kills you during it. Sometimes it's the recovery, secondary infections that come during and after that get you from it. But you are in the right place to deal with it. She is already one strong little baby to have gotten it and recovered mostly at home. Just be a complete BITCH (I hate that word) and get what you need done for your kid.
And Oh, by the way, that person in the hospital who said you can't wait. That was your angel for the day. Just like the check-in receptionist lady and the Somali family behind me with a bleeding kid -- when I had to go in with my very sick little boy in July of 2010.
You and your little one will likely be all right. And MRI's although scary -- it is good they will do one and maybe you can figure it out. Hang in there.
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Post by bumblebee23 on Feb 6, 2013 13:52:29 GMT -6
OMG How scary! Thinking of you and your little one and sending lots of good vibes.
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Post by ilovemybooboo on Feb 6, 2013 16:14:41 GMT -6
When my DD was a few days old she started rolling her eyes in the back of her head and turning red and holding her breath for about 5-10 seconds at a time. Scared the crap out of my DH and me! I called her dr right away and they asked if she was turning blue and i said no, so I didn't bring her in, but stayed up that entire night to watch her sleep. But then it kept happening a few times a day so we brought her in. It never happened in front of the dr. so they just assumed it was reflux and it was painful for her so she held her breath. I would just pick her up right away and rub her back, try to pry open her mouth so it would force her to breathe again. So they put her on reflux meds, which didn't help, then switched meds, which helped a bit. They told me she would just grow out of it once she started sitting up, which she did. So I totally understand how worried you are! What got me through those scary episodes was just being confident that I was there for her and could handle it, even though inside I was freaking out! I hope things calm down for her and they figure things out!
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Post by ballerinamomma on Feb 7, 2013 6:31:28 GMT -6
Thank you all for sharing your experiences!!! The last couple of days, overall, have been uneventful. Today is a big day. I'm a nervous wreck. On top of everything all three of us got sick from the hospital. I'm praying it isn't the flu. We are likely going to go to her pediatrician this morning to get her checked out. We all have a raspy cough. No fever, no sore throat (just dry), no stuffy nose.
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Post by ballerinamomma on Feb 7, 2013 6:32:43 GMT -6
Ill update more after her neuro appointment. Hoping my nerves can calm down as we still have 8 hours to go. My stomach is in knots.
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