January 2016 Moms
BarrettJ89
member
Sandifer's Syndrome?
BarrettJ89
member
We took DD to a gastro specialist this week as the screaming fits have not subsided. We've changed her meds, we use anti-colic bottles, she sits upright during and after feedings, blah blah blah.
Something still doesn't seem right. If this was just colic, or just reflux, I feel like we would have had change by now, but we have not. So to the gastro we went... she again says it's just reflux.
But I got the follow up papers on the mail and they state that she has reflux, explosive stools, and Sandifer's Syndrome. This was NEVER mentioned?! Oh, and that she's much too thin. She's gained almost 6 lbs in less than 4 months.
Somebody talk me down before I call them in the morning and tell them how I really feel... I'm so pissed. How can they put a diagnosis on my child, without even mention of it at the appointment?!
And I'm still googling, trying to figure out what exactly sandifer's is...
Something still doesn't seem right. If this was just colic, or just reflux, I feel like we would have had change by now, but we have not. So to the gastro we went... she again says it's just reflux.
But I got the follow up papers on the mail and they state that she has reflux, explosive stools, and Sandifer's Syndrome. This was NEVER mentioned?! Oh, and that she's much too thin. She's gained almost 6 lbs in less than 4 months.
Somebody talk me down before I call them in the morning and tell them how I really feel... I'm so pissed. How can they put a diagnosis on my child, without even mention of it at the appointment?!
And I'm still googling, trying to figure out what exactly sandifer's is...
Re: Sandifer's Syndrome?
DD2 was diagnosed when I took her to the pediatric ER. I thought she was having seizures. It mimics seizures but they aren't seizures. Most kiddos out grow it.
The episodes are generally seen around feeding times and up to 2 hours after feeding. To stop or prevent the episodes from happening, you have to stop the acid reflux from happening in the first place.
We add rice cereal to DD2's bottles to help. We also do a teaspoon of Miralax once a day to help. I'm against doing any acid reflux meds because even the studies say they aren't proven to help in kiddos under a year old, but if it is helping your kiddos, go for it!
Here is a link that matches the hand out DH and I were given in the pediatric ER.
https://emedicine.medscape.com/article/931761-overview
Here is a YouTube video that matches exactly what DD2 does during a Sandifer syndrome episode.
Ugh, sorry for the rant. I'm just exhausted and frustrated.
It sounds like it could possibly be high levels of acid and reflux. It can cause both, but not every kiddo presents the same and this is just my opinion, that GI doctor should have done more than just say it's reflux.
I would look into all the options to treat acid reflux and focus on home treatments for options to help you with her at home. Her feedings may need to change because it could be something as far as feedings that her stomach is responding to by producing too much acid. However, I'm concerned that her doc didn't want to watch the video. Watching the video would have told the doc what's going on. We can examine kiddos in office all day, but parents are with them all the time, so they really should have taken all the info you brought to them into consideration before declairing it's just reflux.
Friends of ours had to put their LO on Similac Spit Up. I'm not sure if that is something you've tried, or have even heard of. I can't imagine going through more formula changes at this point, because I know you've been dealing with this for quite a while. I totally feel for you! I'd be pulling my hair out if we were still having those issues with Griffin.
Edit: the app posted before I was done. I'm too tired to remember what I wrote, but I really hope you figure out what is wrong and get some relief soon!! I hope the doctors look into it more!
@teachmegs817 she's still on Nutramigen and they never even brought up the idea of further testing. The only test they ran was to check for blood in her stool. No ultrasound, nada.
Edit: added more
edit: just noticed the comment above about the different formulas so I'm guessing it's something you've tried. I hope you find a solution soon.
Glad she will be going to the children's hospital to be seen! Usually docs at Children's hospitals have MacGyver things to help when all the other doctors can't do anything! I hope you all get answers so then she can feel better and not be in pain!
I hope you get some answers soon when you go to the specialist, and that you all get some relief from her being so upset and hurting. I just remember talking with you on here about colic and formula issues, because I was going through it and I can't imagine that she's still in the colic phase.
I looked into celiac's, which runs in my family, but as far as my googling has taken me, it looks like her formula and rice cereal are both Gluten free. I did read that her cereal has soy, which is a common allergen in babies. I'm going to find an organic cereal without soy to see if that may be the problem.
As of right now, I got super frustrated and pretty much broke down the other day. Looked at her and said "something's gotta give." So I probably shouldn't have switched so many things at once, I know, but I was at my wits end. The doctors added Zantac back in, I changed her cereal to an organic type, and I changed her bottles to the fast flow nipples.
We are now 3 days with no episodes. It may be a honeymoon period, or even her body asking "WTF, mom?" but we are all desperately hoping this sticks around!
But, NO EPISODES! She's been doing so well. I'm not sure what change worked, but I'm so glad it did. She still fusses, like any other baby, and she's still spitting up a ton... but she's not screaming in pain! She even insists on sleeping on her belly!