Women's Health: Postpartum Community
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165078 tn?1255610007

My DD had another episode - Please Pray!

Hi Friends!  As most of you know my dd had had a couple Febrile seizures over the past month and Friday we had another.  I got called home from work to the same situation.  Again I had to call 911 to scared to drive her myself to CHOP.  CHOP was just voted the #1 Children's Hospital in the nation but when I call 911 they take me to St. Christopher's Hospital for Children because it is closer.  I know how lucky I am to have two within 15 minutes of my home but I would prefer CHOP.

Anyway, I had already scheduled tests for her on my own at CHOP the first being this afternoon for an EEG.  They admitted her to St. Chris's on Friday and I declined any tests there I just got a list and will do all those tests at CHOP.  They are pretty sure she is having some type of seizure issue.  So far it has not had any effect on her developmentally but they told me it could in the future.  First they are going to do the Rule Out system.  All tests on seizures first.  If they all come back clear they will do testing for reflux since all three times she had just had rice cereal (she has this and this does not happen but it is a commen factor) then if that is clear they are going to do tests on something rare called Mastocytosis because on Friday she developed a rash head to toe.

Poor baby is scheduled for her shots tomorrow and just got a head cold last night.  She is 6.5 months old.  She was NEVER sick until October 8th.  

Anyone out there who has had any experience with any of this please let me know how you are doing?  Everyone else please say a little prayer for her - she is such a good baby I cant bare to see her go through this.
12 Responses
Avatar universal
Of course she and your family will be in my prayers.
300926 tn?1253586116
I will be sure to say a prayer for you all.  God Bless.
Avatar universal
I was just thinking about you guys last night.  They had sent a family from the "Extreme Home makeover show" to CHOP. I've only ever heard of it because of you.

I'm so so sorry that your going through this.  She is just to little to be put through all these test.  I cant even imagine. I wish that there were more we can do than just pray.  But I really have no clue. :(

I saw her christmas pictures and she looks so adorable. It's hard to believe that she's sicky, she looks so happy and healthy.  And she is way advanced! I cant believed she's ready to walk.  

I hope it really is something as simple as a food allergy.  Just so it could be done with.  I'm sure you've done tons of research yourself.

Are you holding off on her vaccines again?
210400 tn?1325384170
That is so sad, I will keep your family in my prayers keep us posted.
165078 tn?1255610007
Thank you all.  No I am not holding off on vaccines after today.  She is only 2 weeks behind and that was only because I wanted an EEG done first.  There is one shot she should not get if she is having seizures - the DPat shot?  That is the only reason for the two week delay.  If today is good tomorrow she gets the shots but now she has a head cold thanks to St. Christopher's germy ER so they may choose not to give them to her since she is sick.

She is fine and happy and when these episodes happen they are so sudden.  Then a 1/2 hour later she is fine again.  That is the crazy part.  

She really is trying to walk a lot this week.  I really think if I leave go she will do it.  she can stand for longer periods now too.  I never heard of a 7 month old walking but she would just to make my life harder - I did not child proof the rest of hte house.  Just her room and the living room :(
250155 tn?1485299539
i am so sorry!  i can't even imagine going through that!  your family will be in my prayers.  i've talked to you in an earlier post about CHOP...  if anyone can fix her, its them!  
Avatar universal
I'll say a prayer for you and your little one.  Good luck.
165078 tn?1255610007
Update - My dd went through 5 hours of testing yesterday with an EEG then with two doctors.  Her EEG did not show anything abnormal - THANK GOD!  She even had those chills during the procedure and also did the tongue thing that she does and it still came out normal.  The doctors did tests on her development and she was on target with everything and ahead with sitting up/walking just as I had thought.  They said they do believe she may be having some type of seizure/passing out spells but whatever they are it is not something to be concerned with at this point.  If it were her development would have slowed down by now.

They also said as people have told me on here that the chills could be a spell or could be her peeing :)  So nice to get advice on here because I got both of those when I asked the question last week so both answers were right.

They do want to do some cardiac testing thinking maybe when she gets sick her heart slows which would cause her to pass out and/or turn blue.  With my pregnancy history - and my going into A-Fib during pregnancy this is a possiblity.  

Thank you for your prayers they worked.  She is ok mentally thats is all I needed to hear.  CHOP is great - they took their time and did every test possible.  They really want to see her during an episode but like I said before I cant get her there when I call 911

Thanks to her hospital stay she now had a horrible head cold.  Last night she started choking on her flem.  It was scary I was in my usual panic but I got the blue sucky thing and put it right down and sucked away.  Once her doctor called he said I could give her tylonel which I did and then she slept a little.  She is not eating good either.  My poor baby has been through so much.

Thank you again.  :)
Avatar universal
Awww...so sorry to hear that she's going through such a bad cold.  The good news is that she's ok.  Thanks for updating :)
Avatar universal
I will continue praying for her. Please keep us updated on her cardiac testing.
173820 tn?1224939758
Glad to hear everything is getting a bit better for you with knowing the results.  I hope she feels better with the cold thing.  We just transfered most of Blake's dr to CHOP from st. Chris, Im hoping for more clear answers and quicker results.  Take care and I will keep you guys in my prayers!
165078 tn?1255610007
I am sorry I just read about Blake - My mind has been all over the place lately so I am sorry if I missed your posts about Blake.  Sounds like he is doing much better now.  Was Blake in St. Chris's from birth?  I know they have a good reputation too its just that CHOP is the best and I found CHOP to be much cleaner and an all around better enviornment for the kids.  St. Chris ER is horrible.  Small and about 110 degrees.  

I will keep Blake in my prayers for a speedy recovery and much needed answers to mommy.  Good Luck.
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