Thursday, October 6, 2011

Reflux {and my poor boys}

Being a parent is hard.

Nothing is easy about caring for two little ones. It's frightening knowing that you are in complete control of their lives. You and you alone.

And sometimes it's exhausting, frustrating, demanding, challenging and overwhelming. Other times it's wonderful.

Most weeks it's a combination of both.

This week is not a wonderful one.

Connor has all the signs of Aidan's severe reflux. I spoke too soon and was perhaps overly hopeful that he wouldn't have reflux- and if he did, I thought it would be mild.

Boy was I wrong.

He hasn't slept since Sunday night. It's Thursday. I'm exhausted and I feel so helpless. My poor little guy is in extreme pain. Tomorrow we are headed to the Pediatrician, where medication will be prescribed and my prayers of some relief for Connor will hopefully be answered.

I pray that we can get this under control and he will not have GERD (Gastroesophageal reflux disease) like Aidan did. What a nightmare it was for him. He literally lost weight as he got older and was in the low percentile range his entire first year... usually around 5%.

He would scream and arch his back in pain after every feeding and would literally vomit up everything that he had just consumed. Even an hour or so after he ate he would spit up curdled milk and stomach acid.

Reflux is fairly common in babies, but Aidan had GERD, which is a severe form. When he was around 8 months old, his reflux had seemed to go away. Usually when kids start eating solid foods their reflux will diminish. Cautiously we started weaning him from his meds.

Then he started having seizures.

We were terrified and had no idea why this was happening. His doctor referred us to a Pediatric Neurologist.

Aidan had to have an EEG, but the results came back normal. I remember having to hold him down for over an hour as they carefully marked his head with a red marker. They had to measure out the spots for the electrodes exactly so that his readings would be accurate.

After that he had to have an MRI- while under anesthesia. It was terrifying to think that they had to put him under and that I wasn't allowed to be there for the process. Having to stay out in the waiting room and not knowing what they were doing to my baby was torture. I was allowed back in the room after he had been scanned and he was screaming. He woke up in a strange place with strange adults and no sign of Mommy. I can't imagine how he felt. But again, like with the EEG, everything came back normal.

We were stunned. What on Earth was causing our sweet baby to have seizures? We videotaped him having an episode and brought  it in for his doctor to see. He immediately knew what was happening to Aidan.

He has a condition called Sandifer's Syndrome, a rare disorder. It affects less than 1% of children who has reflux. Basically it is just his body's reaction to reflux... it stared causing him to twitch and have facial ticks which looked like he was having a seizure.

Who knew that reflux could cause such a thing?

And now, here we are again... going through the ringer with Connor. Atleast this time we are much better prepared and knowledgable about his condition. We're prepared to deal with it, atleast from a textbook standpoint.

Did you know that many times babies with GERD are thought to have colic and not a form of reflux? It's because they cry continuously because they are in so much pain. Just imagine that. They'll have a reflux attack after eating and while burping, crying and even straining to pass gas. So, basically all of the time.

It's extremely hard on families of children with this problem. The stress, helplessness, anger and fatigue can be overwhelming.

So, please pray tonight for baby Connor and our family. Pray that we have strength to help him through this time in his life and that we are able to get it under control.

Here is a very short video from a wonderful website called Reflux.org that helps families dealing with children who have reflux...



Sorry to have been absent for so long friends. I have missed you, but my cup runneth over at the moment.. and not in a good way!

~Emily

5 comments:

  1. So sorry to hear of your difficulties with reflux. Praying for a little relief and some sleep tonight!!

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  2. I had no idea about GERD or any of the complications that could result from it. I do, however, understand the complicated emotions when not one but both of your children share an illness or condition. When C was born, we hoped he didn't have ABO incompatibility like G did, but unfortunately he had it (it's why both my full-term kids were NICU babies); but, in a way, having "been there, done that" with G made it easier to cope with it for C... I hope the fact you've been through it before gives you at least some guidance for dealing with reflux (and hopefully none of the complications) again.

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  3. Sorry that you are going through this Emily and your little guy! Will had reflux too but not that bad. But I do remember those tearful screams and not knowing what to do.
    Praying that all goes well for you guys!

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  4. Oh, honey. I texted you but I know you're busy with all of this. I am praying for all of you and hope that C's is not nearly as bad as A's and that it clears up BEFORE solids!

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  5. Your poor boys. Saying prayers and sending hugs your way. I hope that Connor's isn't as severe or scary as Aiden's.

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