Today is Austin's 3 & 1/2 Year Birthday!!!

Wow!  Time has passed so quickly, too quickly, actually.  It's bitter sweet to see my baby has grown from a tiny baby into a boy, basically a man, in 3 and 1/2 quick years.  I am proud to be his mommy.  He talks too much, runs too much, and bumps his head way too much!  He can spell his name, write his name, and sing his ABCs.  He loves school, and is a social butterfly.  It's hard to believe that just 3 short years ago, he looked as if he was having seizures from simple baby acid reflux!  Now my son eats, and enjoys any food he wishes to!  Including his favorites, ice cream, candy, and Cheetos (lol, of course, on a limited basis).`

I must apologize, because I now see that other mothers have found my blog to be useful, and I have not been checking up on it this past year.  How quickly you forget the intensity of the Sandifers Syndrome when it's gone!  That's how it was for us too.  I was having trouble getting my sons prescription filled, as Prevacid Solutabs are very expensive.  I bought the Prevacid capsules over the counter, and made an applesauce mix for him at times, (this can be done, because it is the very same medicine, it is not prescribed, but a mother will do what she needs to do to keep her baby comfortable!), but I soon realized, he no longer needed the medicine!  I think I was more terrified than my son to stop the medicine.  I could  not bare to see him in pain like that again.

So I do intend to keep better tabs on this page, because I am more than happy to answer questions other mothers may have while trying to figure out what is happening to their sweet babies.  It is not fair, but babies are strong, and they will get through it.  Every experience brings a greater understanding to this thing we call "life," I am just grateful that my little man was able to get the treatment he needed by having a persistent mother who wouldn't give in.  We know more about our babies than any doctor.  At least that's how I feel :)

Summer 2012, Austin's Reflux Update.

I do apologize for not updating this blog much.  Life is busy, and Austin's reflux has subsided.  Needless to say, I don't think about it as much as I used to.  My son is now 2 years 4 months old.  We still give him Prevacid Solutabs, but I am honestly at the point of trying to wean him.  I really feel as if he may no longer need the medicine regimen!  This is thrilling!  We have since discovered a need for daily Clairiton as he had countless ear infections this year and the doctor suggested allergies as the root of the problem.  I honestly think they were right this time!

I certainly hope doctors are becoming more aware of the severity of baby reflux, and are properly treating the condition with PPI's.  PPI's are very mild and they will allow your beautiful child to be as comfortable as they should be.  Thinking about how much pain my son was in during his first 6 months of life makes me feel so guilty!  Why didn't I know?  How did it really get that bad!?  We all must learn from experiences though, and as a first time mother whose baby was very good at self soothing (small meals, back arching, etc), I honestly had no idea he was suffering until the Sandifer's set in.  I was slightly concerned about spitting up, but family members told me it was normal, some babies spit up more than others.  I would be suspicious the very moment my second child (if and when I am blessed with one), spit up.  It is a hereditary condition, and Austin most definitely has taught me so much.  His sibling will not have to suffer as he did.  I am so grateful my little man is now happy and healthy.  What a blessing it is to have gone through seizure like symptoms to discover my child is perfectly fine.  I am still recovering from some PTSD symptoms from the whole situation, but each day the memory subsides a bit more.  I hope your children are getting the care they need and that sharing my experience may save other mothers and babies extended torment.  I hope everyone is having a lovely Summer!  Take Care!

<3 Gillian

Was that a seizure?? Not necessarily, Baby Acid Reflux can Cause Seizure LIKE Symptoms.

My son is still battling the acid reflux, but it's really more of a nuisance at this point, rather than a disorder.  As of yesterday, he's officially 19 months old.  Most children, by his age have outgrown the reflux.  I am unsure why I have been unable to wean him off medicine, but he usually only needs half a solutab a day.  I'm grateful that in a years time, my son has gone from being unable to eat solid foods, to a boy who loves chips and salsa.  Thanks to a proton pump inhibitor like Prevacid, my son can enjoy these foods with little remorse. 

I'm hoping that this blog helps you find a good place.  It's hard to see your child suffering, and when you lose hope in medical care givers as I did, you begin to wonder if your child will ever be cured.  I took my son to the emergency room after his very first episode.  I looked the physician in the eye and said, "he just ate a whole container of bananas, more solid food then he has ever eaten.  He refuses solid food."  She told me there is no way that seizures can be caused by eating.  Yes, that is true, but she needs to go back to school and learn that stomach problems in babies, CAN CAUSE SEIZURE LIKE SYMPTOMS.  If one physician would have hinted at that, my child wouldn't have gone on so long untreated.  The closest I got regarding an answer from a doctor, was our neurologist.  She said that maybe the reflux is causing him to hold his breath and pass out, and seize.  That's not the case, but she came close.  I remember the episodes so clearly.  There is help!  I found great support through, Surviving Reflux: Baby Center
Thank goodness for this wonderful forum.  I learned so much more from their experiences, then I did from any doctor. 

 In the beginning the doctor will insist you try Zantac.  Most likely this will help for a short period of time.  Maybe 2 weeks to a month.  Your baby will eventually grow immune to the medicine, and again be in reflux hell.  Your baby needs a good Proton Pump Inhibitor.  My son does so well on Prevacid Solutabs.  Of course, you and your doctor will be able to find the medicine that fits your baby the best.  My biggest tribulation was just getting a diagnosis.  I am saddened that my baby went so long undiagnosed.  I blame myself, but at the same time, it was my research that lead him to a treatment.  Even though he was 7 months old before he began his solutab regime, I am happy that I eventually got him to the place he needed to be.

They Grow Up Too Fast

I spent 2 + long months discovering what was wrong with Austin.  I had to get him on the right medicine, and conclude Sandifer's Syndrome was indeed what was wrong with my son.  It made me feel like I really missed something.  I really don't want other mothers to feel as I did.  I missed the good things because I was too busy watching for the bad.  I would sit up and stare at Austin for hours on end.


  Between working , not sleeping, and worrying about him, I was moody, depressed, and tired. I still can't go a day without worrying if he's really better.  Why must I waste my time worrying about losing him?  When Austin had his first episode, I realized how quickly my life could crumble beneath me.  Every minute of every day revolves around Austin in some way.  If I'm at work, I'm telling someone about his most recent accomplishments.  If I'm shopping, I'm shopping for him.  I always tell him, I love you more then the moon, and the rain, and the sun; because I could live without them, but I could never live without you.  I am thankful Austin does not have seizures, but if he had, I would have loved him the same.  I would have learned as much as I possibly could about epilepsy.

  I feel the same way about G.E.R.D.  From the very beginning, I've longed to know as much as I possibly could about my son's condition.  I've spent so much time watching You tube videos.  I've also read many different articles on sandifer's syndrome.  I've even learned about making my own reflux medication, if needed, with baby buffers, and the reflux rebels.  We've done great with the solutabs, so I don't need to do this.  I'm thankful that it's around for people who's babies don't take the solutabs as well, and for those who's children don't respond to them as well as my child does.  I would have loved to find a blog about Sandifer's Syndrome when I began researching, "seizures after eating".  I wonder how many babies out there have had sandifer's episodes and a doctor told their mothers, "sometimes babies just have seizures, for no reason at all."  Well sometimes what appears to be a seizure, is not really a seizure at all!

Solid Foods are SCARY!

My son was just about 6 months and I was eager to take some pressure off my rigid pumping schedule.  It wasn't very easy to pump at work every 3 hours while serving tables.  I didn't like asking for help and some tables would wonder where I "disappeared" to.  I'm sure some thought I was out smoking cigarettes etc.  In our formula fed nation, rarely do people think about breast feeding mothers on the job.  Guess they just assume mothers who work formula feed.  A week before Austin's 6 month "birthday," I decided to give him some sweet potatoes... I know, bad idea, but solid foods seemed like so much fun.

  He took a few bites and spit it all up.  I feared an allergy, but my mother assured me that he had no symptoms of an allergy.  I just assumed he wasn't ready.  Then at his 6 month check up I was pressured by the nurse practitioner to feed him solid food 3 times a day.  That my son was on the small side and she made me feel like it was my fault and that Austin should have been eating solids regularly for a while by then.  So, I tried, and i tried, and I tried some more.  He would stick his little tongue out to block the spoon.  If he took the food in, he'd push it back out with his tongue.  In the back of my head, all I heard was, "your baby's small!  Feed him,"  Why didn't I listen to my baby who was saying, "the food makes my tummy hurt!"  I continued to push him.  I would hold the bottle up and he'd open his mouth for it and I'd stick the spoon in.  I feel so bad looking back, but remember what the practitioner told me?  Also, my son had a rash that continued to get worse over time.
.

 I was told to put hydrocortisone cream on it, that babies just have sensitive skin.  Later, a practitioner told me it was ring worm.  I even put fungus cream on his little belly!  It ended up the acid in his saliva was causing the rash.  It cleared up as soon as we treated the acid.  August 28th 2010 was the worst day of my life.  I decided to try a new food with Austin.  It was the first, and last time he had bananas.  He seemed to love them!  He ate the entire container!  Soon after we decided to take an afternoon walk.  My husband picked Austin up and we ran out the door to get the stroller from the car.  As we walked Austin looked strange.  His eyes looked like they were rolling back, and then he started to shutter!!  I went ballistic.  Was my baby dying in his father's arms?  Was he having a seizure?  It sure looked that way!  We jumped in the car with no car seat.  Erik held my baby while I drove like a nut to the hospital.  I kept asking, "is he breathing?  Is he out of it?"  Erik said he's breathing and he's come to.  Afterwards he was VERY lethargic, but he was alive and seemed ok.  After a very hectic drive to the hospital, we were finally there.  They rushed him back because I told them he had a seizure and didn't feel warm.  They checked his temperature and it was 99.5.  They did a CT scan and blood work, all normal.  They refereed us to a pediatric neurologist.  I stressed to the doctor that he had just eaten a whole container of a new food and was there any way the two could be related?  He never ate so much before.  She insisted there was no connection.  An allergy would not cause a seizure.  The weekend was long and I couldn't take my eyes off him.  I didn't sleep I just researched online.  I decided to google baby seizure after eating.  Some how I came upon, "Sandifer's Syndrome."  I was in awe... everything I read, seemed to relate to my baby.  The seizure symptom was only one of his reflux symptoms.  He also was very congested that weekend.  He wheezed and even gasped for air.   First thing Monday morning I rushed to his pediatrician.  I explained everything and got a prescription for an upper GI barium test.  I also got a prescription for Zantac, which I later discovered doesn't really help GERD babies.  She wasn't convinced but understood my worry but insisted I see the neurologist also.  So Austin had the barium test.  He didn't really cooperate.  What an archaic test!  They think a baby will drink a chalky substance on their back with a  bunch of doctors staring at them?  They're crazy!  I didn't really get an accurate test, but mild reflux showed up.  It kindof made me think, maybe my baby doesn't have Sandifer's Syndrome... I thought the test would come back severe reflux.  I got lazy with the zantac, thinking something else is to blame for the seizure like symptoms.  We saw a neurologist, and since fever seizures run in my family, she suggested that could be the cause.  She thought my son was very advanced for his age.  He could hold his head up early, turned over early, crawled and sat up early.  She insisted that babies with epilepsy are usually behind.  She also thought Acid Reflux could most definitely be the cause, and not to count that out.  Exactly 28 days after his first episode, he had a second.  We had finally calmed down from the first and were convinced, it was just a fluke.  It was early in the morning, I put him in his new jumper.  He had been breast feeding a lot that night/morning because when I pumped I got very little, when I usually get a lot.  I wondered why my baby stopped jumping, and I looked at his face and there it was... blank stare, eyes rolled back.  I took him out and put him on his side as the neurologist suggested you do when a child has a seizure.  It lasted about a minute and he came out of it lethargic and fussy all day.  I took him to the pediatrician just to make sure he was ok, as the neurologist had suggested.  I put a call into her as well.  I was frustrated.  He hadn't even had solids, so I guess it couldn't be sandifer's syndrome?  He didn't have a fever, guess it's not fever seizures.  I didn't know what I was going to do.  Then my wonderful neurologist called back and insisted that it very well may be the reflux.  Being put in the jumper first thing in the morning could cause the reflux to come up.  She told me to give him a higher dose of zantac through the weekend and get to the pediatrician on Monday and ask for a better medicine.  Thanks to refluxrebels.com I was very educated as to what medicine my baby needed.  He should be on a PPI...  a proton pump inhabiter.  I was very firm with the pediatrician and I finally had one who listened and understood that reflux can cause seizure like symptoms in a baby.  She gave me a prescription for prevacid solutabs and these little pills have forever changed our lives.  He soon after was able to eat solids.  I had never seen him eat so much!   He began sleeping and napping!  His rash cleared up, he gained weight.  His congestion cleared and no seizure like symptoms!  We are going on two months episode free and I am so thankful for the internet, baby center and reflux rebels.  Without my own research, my baby would probably be on seizure medicine still suffering.  Doctor's do not know a baby like a mother does.

The calm before the storm...

My life was forever changed for the better at 2:40 am on February 19th.  My baby boy was finally in my arms after so many months of planning and dreaming.  Thankfully, he was a happy, strong and healthy full term newborn weighing in at 7 lbs 12 oz and 19 1/2 inches long.


 My plan was to breast feed.  I hadn't thought about what I'd do if it didn't work, I just went with it.  Austin latched fine and we had a very good nursing relationship. He was a very colicky newborn.  Every time he ate, he cried for quite a while afterwards.  We found that gripe water helped a lot.  We were very thankful for this natural gas remedy.  He grew out of the colic, but was never a big eater.  3-4 ounces at a time, every couple hours.  I went back to work at 6 weeks PP and Austin was getting bottled pumped milk regularly.  He soon started refusing the breast.  I still don't know if he was spoiled by the bottle or if breast feeding just wasn't the most comfortable way for him to feed.  Austin began eating the bottle hanging off my arm with his head leaning down towards the ground.  We just thought he was being funny.  Austin was always a spitter.  I just assumed he was a, "happy spitter,"  never really stressed over it because people aways say, babies just spit up.  He also was a terrible sleeper.  Naps?  What are naps?

We breezed through the first 6 months with no reason to think Austin was in severe pain.  He was never the biggest baby at his checkups.  He fell into the 50th percentile in the beginning, then later in the 25th, but never lost weight so there were no red flags to suspect baby reflux.  Looking back, I should have known, but as a first time mother how do you really know what's going on inside your baby?  Especially one who learned to deal with the reflux on his own and wasn't a big crier after the newborn colic.