Sandifer's Syndrome?

BarrettJ89 · May 2016

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...

ekscopp · May 2016

I am not defending them by any means, but sometimes they may explain something to you in easy to understand terms then use a diagnosis for medical coding reasons. Not saying this is right at all! Also, Idk her birth weight, but I have read they are supposed to double in 4 months. Still, neither one of these things is ok to find out from paperwork! I really hope you figure out what's going on with your peanut. My heart always breaks when I read what you go through, you are one tough momma!!

Becky012016 · May 2016

Definitely call and ask what the syndrome is and what it means for your little girl. As for the weight gain, pp is correct that most babies double their birth weight by 4-5 months old. My LO will be 16 weeks Friday and has barely gained 6lbs (born at 7.6) yet his dr isn't concerned at all since he's staying on his own growth curve. If your LO is staying on her growth curve then there shouldn't be any issue with the weight. However, the GI specialist may be concerned about weight gain because of the bad reflux/gerd and just making sure she's getting enough nutrients. I hope you get answers soon. Fx for your LO!

fishee333 · May 2016

Hmm I looked it up and it seems like Sandifer's Syndrome can be a part of GERD. So it's probably something you already know about/they explained to you (like pp said, just in simpler terms) but they may be giving it a name for medical coding/billing reasons. Still not okay at all to give her a diagnosis without telling you! Definitely call and figure out why they did that.

BarrettJ89 · May 2016

It's really strange how they went about it. They looked at me like I was an absolute idiot, when along about her reflux and the episodes. I even tried showing her a video, she refused to see it. Now I get a letter addressed to her pediatrician with this explanation (all in letter format) with the Sandifer's Syndrome listed as something separate from the AR... and the bit about her being too thin! She's nearly doubled her weight, but she's grown 7 inches in length in less than 4 months. 7 inches? Of course she's thin. But she's up 6 lbs!

fishee333 · May 2016

That's really annoying, I'd be pissed too. It's like they're not listening to you or communicating with you at all.

PedsIsHardcore · May 2016

DD2 has Sandifer Syndrome. It occurs in 1% of babies with acid reflux and GERD. It's basically their body's response to the reflux.
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.

https://youtu.be/JU2XK0-8Ap0

BarrettJ89 · May 2016

I'm so confused. That doesn't really seem like what happens with Brynlee. She only does it when she's in screaming fits. Inconsolable, high pitched, screaming in pain. A few days before we took her she had an episode of over 6 hours of this. She screams, arches her back, her toes curl, her arms flare, she even has tears! That day, she refused to eat. She only had maybe 4 oz by 5 pm... She was desperate for the bottle, but she take a sip or two, then fight it off and scream. But she would immediately want the bottle again. It was a vicious cycle for hours. The other thing that bothers me (but apparently not the doctors) is that these episodes happen after every single time she poops (within an hour after). And her poops are explosive. Every single one is up her back, out the legs, etc. We've tried 3 brands of diapers. The doctor says it's because of the amount of air she sucks in during her episodes... but how is that if the episodes are AFTER the explosion?

Ugh, sorry for the rant. I'm just exhausted and frustrated.

PedsIsHardcore · May 2016

Yeah, what you're describing it not Sandifer's Syndrome. Sounds like they don't want to investigate and you need to hold them accountable to get her some relief because that's beyond awful! Poor baby girl!
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.

teachmegs817 · May 2016

We had an ultrasound done at the ER for Griffin to rule out Pyloric Stenosis. It actually causes them not to produce stools as often, but it sounds as if your LO isn't having that issue. Did they give her an ultrasound? Also, are you still using the Nutramigen? We ended up having to get Griffin off of it, because it was causing his stools to be real watery after a while. It was almost too simple for his body after being on it for 2 months or so.

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.

jessjuhnke · May 2016

So I don't know much about it or if it's even possible since I'm on the west side of the state but what about U of M? Is it possible to get in there without a referral? I know it's not super close to Detroit but given the whole research aspect etc maybe someone there would listen more?

fishee333 · May 2016

Poor baby and poor mama!

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!

BarrettJ89 · May 2016

@jessjuhnke that's actually where we took her

it was one of the local branches of US of M

BarrettJ89 · May 2016

We had another horrible episode tonight lasting around 5 hours. I'm so upset and frustrated and downright exhausted. I don't know what to do next... I don't think this is just reflux, I don't think this is Sandifer's Syndrome, I don't think this is just colic! Doctors, both her primary and the specialist, told us to wait and see if the reflux meds help, but they aren't. I've looked up pyloric stenosis and that doesn't sound like what she has either! She spits up, but it's never projectile and isn't huge amounts (some times more than others, but it never seems like it's the entire bottle coming back up). She seems like she's in pain when she eats. She's desperate for her bottle, but gets a sip or two and screams in absolute misery.

@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

Knottie43691308 · May 2016

Have you tried giving her a different milk? I don't know, maybe she could be allergic to something and that's why she's hungry but in so much pain. I know a guy who was allergic to his mum's milk so even if she's breastfed I'd try formula.

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.

yvessaintlauren · May 2016

Wow I'm so sorry for you and the baby this sounds horrible. Have you tried bringing her to urgent care or the ER and feeding in front of them? The lack of interest in your baby's feeding worries me. If the doctor thinks shes too thin they should be way more interested in her case. If definitely find a second opinion. Maybe ask around for a pediatric specialist in your area? I live near Baltimore so there are literally a ton of people near me I could recommend but idk what your area is like. Either way, don't let this go. Keep pushing for answers.

yvessaintlauren · May 2016

Also, did you try soy or hypoallergenic formula? If her poops are explosive it seems like it could be a milk allergy. She shouldn't have such runny bowel movements every time.

BarrettJ89 · May 2016

@yvessaintlauren She's on Nutramigen, which is hypoallergenic and easy to digest. We talked last night and are planning to take her to the specialist at Detroit Children's Hospital on the 23rd... I wasn't real concerned about her weight until I noticed that during the episodes, she WANTS the bottle, but can't seem to eat because of the pain.

jordans_wife · May 2016

I am so sorry! This sounds heartbreaking. I would most definitely take her somewhere else until you find a doc willing to listen /watch the video, and come up with a plan. It's not fair your little girl has to be in that much pain. Sounds like you are but I would keep up the persistence bc your little girl depends on it.

PedsIsHardcore · May 2016

Poor baby girl! Yeah, she has something going on that's more than just acid reflux or colic.
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!

teachmegs817 · May 2016

I have no idea why this came to my mind when I was reading through your comments, but it's been on my mind since yesterday. Have you given her any rice cereal or oatmeal in her bottles? When you said even on Nutramigen she was having issues, Celiac Disease came to my mind. Not quite sure why it did, but I know that it can develop in babies.

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.

BarrettJ89 · May 2016

@teachmegs817 she is on cereal. We give her very small amounts of Gerber rice cereal with DHA and probiotic. I'm going to do some reading on celiac's... I hadn't thought of that.

maureenmce · May 2016

@BarrettJ89 - I have no advice, just wanted to give you an internet hug for all you've been going through with your LO! You are an amazing, amazing mom. I would have lost my mind by now if I were in your shoes. So sorry for your struggles and I really hope you get answers soon!

BarrettJ89 · May 2016

I talked to the pediatrician today. The diagnosis of Sandifer's Syndrome is more a clinical diagnosis, rather than a disease, is what he told me. It's referring to the excessive screaming and arching her back. He says that it could still be reflux, so he's adding Zantac back in, on top of the omeprazole.

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.

ctmamaoftwo · May 2016

I know a lot of people have thrown ideas out to you (because all our hearts hurt for what you and your adorable babe are going through). But I just got home from my sons GI appointment (poor guys reflux got so bad he was spitting up blood) but we had just switched him to similac alimentum liquid and he went to get me samples and I said I wanted to switch to powder because it's cheaper. And he told me that there is a difference and the liquid alimentum is the only formula on the market that doesn't contain corn. My nephew has a corn allergy. So just a thought that it might be worth looking into.

BarrettJ89 · May 2016

Wow. That's definitely one I had not heard of!

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!

teachmegs817 · May 2016

@BarrettJ89 How did your appointment go? Did you guys still take her? Hopefully your few days of no episodes that you posted about this past weekend are still in full effect!

BarrettJ89 · May 2016

We actually cancelled the second opinion specialist appointment because we made so many changes that there wouldn't have been enough time for her body to adjust and for the doctor to get a good read on her.

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!

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