Seizures, Food Allergies, Scoliosis and One Brave Little Girl

Hello and welcome to my blog!  First of all I have to thank my dear friend Lisanne for helping me create this page because if it wasnt for her it probably wouldnt exist!  I will start off by saying I am the mother to 3 beautiful, smart and funny little girls who bring so much joy to my life.  You will hear about all of them throughout my blog however this was mainly created to keep everyone up to date on our youngest daughter Emily who has been through so much in this last year.  I wanted a way to share her journey with our family and friends and hopefully continue to find information and support from new friends and be of support to others who are going through the same situation we are.   
When Emily was about 6 months old we started to notice that her back seemed a little "off".  To me it was obvious, to others not so much.  What i was seeing was a bulge on one side of her back.  It felt as if her ribs on her left side were being pushed out.  I didn't know it then but in fact they were.  She also tended to lean her head to the right and lean her weight to her right when she was sitting upright.  I didn't panic, however I did bring it up at her 6 month well baby visit.  Our pediatrician listened to my concerns but insisted that it was just a muscle and it would straighten itself out as she grew.  It didn't.  I continued to notice this hump on her back and I continued to bring it up at every well baby visit.  At her 1 year well baby appointment I was told that if she indeed did have scoliosis that she would out grow it and that scoliosis in infants is so rare that its highly unlikely that she would have it.  The wait and see card was played again.  Now that we are where we are at today, I find myself questioning what I was thinking to let this go on as long as it did.  I mean they are physicians specializing in caring for our precious children! They have to know what they are talking about right?! Wrong.  Most pediatricians out there do not know the facts about Infantile Scoliosis.  In fact, one day before meeting with Emilys Orthepedic Surgeon, when I went to our pediatric office to pick up her growth chart, I was told by the pediatrician that was there (who btw has never seen Emily before) that her scoliosis is Congenital.  Congenital means that she has an underlying structural condition causing her scoliosis.  I was mortified.  Through tears I asked him how he knew that and asked why this is the first I have heard of this.  His answer...."all scoliosis in babies is congenital".  I knew that after 2 months of my own research that it was not true.  How is it possible that someone in the medical field, specifically pediatrics wouldn't know this???  Im getting way ahead of myself...
Shortly after Emily turned a year old she gave us a good scare when she had her first seizure.  It was by far the single scariest moment of my life.  This wasn't a twitch or a blank stare but a full on grand mal seizure.  I think Daddy was in shock and didn't know what was happening but I knew what I was seeing.  Nonetheless I wasn't prepared to be seeing it.  He grabbed her and held her (we know now not to do that!) and I ran up the stairs and called 911. It felt like they were never going to show up!  I just cried and screamed into the phone for help.  I couldnt even look at my baby because I was so afraid of what was happening to her.  The memory of it makes me sad to this day.  We ended up at Cincinnati Childrens Hospital or CCHMC, as I will probably refer to it as from now on, and after a couple of hours we were sent home with the " its a typical febrile seizure, we see it everyday, she's fine" speech, we were referred to CCHMC Neurology for a consultation and told to follow up with our pediatrician within the next 2 days.  Well I did. The next morning.  I wanted answers.  I wanted someone to tell me what she was sick with to cause her to have a febrile seizure.  Ear infection, flu, swollen throat, something.  Well there was absolutely nothing wrong with her.  I immediately made the appointment with Neurology and we would see them 3 months later.  In that 3 months she did not have another seizure.  I started to doubt my gut instinct that this would indeed happen again and I started to question even keeping the Neuro appointment. But i did.  If anything, it got our foot in the door and would keep us from jumping through hoops if she were to have another one.  She did.  3 more to date.  Each seizure came with a spike in fever after the fact but no definitive illness following.  She then had her 4th and worst seizure on January 21st, 2013.  Caroline found her.  We had just returned from dropping Lydia off at her first sewing class and I had put Em in my bed with a movie.  Caroline took our pup Daisy out and I was washing dishes in the kitchen.  When Caroline came back in I told her to go sit with Emily and when she walked in I heard her scream her name.  The kind where you know something is wrong and I did.  I rushed in to find my baby upright and slouched over having a seizure.  This time she was foaming at the mouth and her hands and lips began to turn blue.  It was terrifying and seemed like it would never end.  I have not learned yet how to be calm for her when this is happening.  It's possibly the hardest thing in the world to watch happen to your child.  I again called 911 and she was rushed back downtown.  After nurse after nurse coming in for 3 hours checking vitals, I requested to speak with someone in the Neurology department.  A sweet doctor came down and agreed that it is now time to start looking into the possiblity that there is something else going on besides the "typical" febrile seizure.  She ordered an EEG and an MRI.  I know all about EEGs and what they can tell you or not tell you.  Emily had her EEG the following week and the results came back normal.  Im glad. Skeptical...but i'll take it!  We did not schedule the MRI at this point because we had a feeling that her Ortho doc would also order an MRI (he did) and we didn't want to put her through that twice in such a short time frame.  You see, putting a 2 year old through an MRI means they need to be sedated.  More to follow on that...
As if 4 grand mal seizures and questions about her back were not enough, it also came to be that our sweet girl has multiple life threatening food allergies! About 2 months after Emily had her first seizure she had a reaction to eating roughly a tablespoon worth of scrambled eggs.  We were all enjoying breakfast and thought she could at least try the eggs...they're soft enough right? Ten minutes later I noticed her face starting to look red and swollen.  Her eyes were puffy and watering.  She had hives all over her lips and cheeks and she was viciously clawing at her throat!  I will admit I had no idea what was happening!  I sensed it must have been something she ate, which really could have only been the eggs but what I didn't know is that my baby was on her way to anaphylactic shock.  I just couldn't believe that my child was more then likely allergic to eggs.  We rushed her to the closest hospital at the request of the on call pediatrician and by that point she was vomiting.  They gave her Benadryl which she threw up so they had to administer a shot.  This really threw her dad and I for a loop.  We left there confused and scared and with a referral to CCHMC Allergy Department.  She was seen a week later and tested for the major food allergies and tested positive to eggs, cows milk, tree nuts and peanuts.  Blood work confirmed.  I was at a loss.  I didn't know what to do.  I had two other growing girls at home.  How would this effect them?  How would we protect Emily from the foods that would harm her?  What were we going to eat?!!  I was sent home with a small packet of information.  Mostly showing me what foods her allergens were hidden in or other names for them and that was about it.  I had to figure this out on my own.  A few websites and a couple blogs later it was decided that we would clean house! Everything went! Together my husband and I read labels and threw out anything that Emily couldn't eat or touch.  Extreme?  I don't think so.  In my mind her home needed to 100% safe.  A place where nobody has to think twice about if peanut butter was not completely washed off of a knife or worrying if my 5 year old dropped a piece of a granola bar on the floor for Emily to touch.  I wont be able to be a standing next to her 24 hours a day for the rest of her life.  She may hopefully outgrow her dairy and egg allergy but never her allergy to nuts.  Someday she will have to be out in the big world reading labels and being on guard for herself...but not yet.  I am so incredibly fortunate to have two older daughters that love their baby sister so much that they would move mountains for her. Not one complaint!  I guess it goes to show that these kids were eating pretty healthy to begin with.  We changed how we eat.  It really hasn't even been that difficult and while most things from the grocery store we cannot eat, we have been pleasantly surprised at what we can!  When you have a child with severe food allergies it is on your mind all day every day.  It sounds consuming but its not.  Its now part of who we are and unless you yourself have a child or you love a child with food allergies, you will never fully understand how food can be an enemy.  As a family we have taught ourselves how to live with this without it being a burden.  Our only priority is keeping her safe. 
Before I begin to end this incredibly long first post ( I promise they won't all be this long!) I will as briefly as possible catch you up on where we are at now with scoliosis.  At Emilys 2 year well baby visit December 14th, 2012 I YET AGAIN asked him to look at her back.  This had gone on long enough.  It was time to find out what, if anything was going on.  He ordered an Xray which we went to immediately afterwards and he told me he would call me with whatever the results were.  I heard back the following day.  He confirmed my fear that our precious baby had the very rare form of scoliosis commonly known as Early Onset Scoliosis or Progressive Infantile Scoliosis.  I had many questions.  He didn't have much to say about it, simply referring me to CCHMC Orthepedics for a consultation and I was to specifically see a Dr. Sturm.  I would later find out why.  I called and made her appointment for February 7th (changed to the 5th) and found myself spending nearly two months researching Infantile Scoliosis, joining groups, meeting other mothers with children suffering this condition.  I learned so much from other moms blogs and especially from the Infantile Scoliosis Outreach Program or ISOP.  I found out how rare this condition is and that if left untreated to progress you will then be looking at deformity, repeated and very risky surgeries and if the curve twists and turns enough it can cause deterioration of the organs and risk crushing the lungs.  All of which I want no part of!  Infantile Scoliosis occurs in 1% of the population. In most cases in a child under the age of 2 a slight curve will correct itself. 90 % actually.  The other 10% wont.  Our baby is a part of that 10%.  Emily saw Dr. Sturm last Tuesday.  He told us with the size of her curve and the size of her RVAD (Rib Vertebral Angle) her spine will only continue to deteriorate over time.  She has a lower thoracic curvature from T6-T12.  He suggested that she begin Mehta Casting immediately, something I was already very familiar with and prepared to hear.  In fact I prayed for 2 months that she would be a candidate for this treatment, the ONLY treatment for Early Onset Scoliosis.  I already knew she had it.  I had known since she was 6 months old.  So while this journey she is about to embark on is going to be difficult and sad for her, it has to be done now.  Dr. Sturm also ordered an MRI like I suspected but said it can be done after she has been casted.  His nurse Linda called me today and told me that her surgery is scheduled for March 5th.  Please keep our brave little girl and her big sisters in your thoughts and prayers!  More to come...