Reflux and Sandifer Syndrome?

[YouandMe]

Does anyone have any experience or knowledge on Sandifer Syndrome?

My 6 week old was diagnosed with silent reflux and in my search to find help and answers I came across Sandifer Syndrome. I'm nervous my son might have it! I talked to the pediatrician and she told me she thought I had nothing to worry about because it peaks at 1 years old but if I was that upset to try and get a video of his actions and she could refer me to a neurologist...I'm so nervous.

From what I've read it's a result of the horrible pain he's feeling from the reflux. He has spent the last 6 weeks miserable, screaming almost 24/7. I've looked at videos of other children with Sandifer on youtube and he does some of those things like flailing his arms during or after a feeding, and does something that almost looks like he's stretching his arms up and back but his head kind of bobs with it. Apparently it's to get into a position that the acid won't hurt them in. But then why do I need a neurologist??? I'm so scared, first time Mom and just want to do right by my new baby!

 

[BabyDragon]

It's horrible isn't it?

I'm in the same position. My pediatrician made me take her to the ER, just in case it was a seizure. The ER pediatrician wrote it off as colic and breath holding tantrum.

Saw another pediatrician at the office... He never even heard of sandifer when I mentioned I believe my LO is suffering from it.., instead he upped her zantac dosage (whereas the ER pediatrician told me she wouldn't medicate a newborn.) and gave me a referral to get an EEG done. Instead of offering a referral for a GI specialist, he suggested a neurologist too...

I'm so confused. I hate medicating her, but watching her in such utter agony from silent reflux is horrifying...

Especially when she starts having the sandifer's episode then checks out of reality and I have to literally check her breathing....

I will be stalking this thread....

Hugs to your little one!

 

[YouandMe]

I'm so glad you responded! It's really nice to know we're not alone! I've been so desperate for answers that I've been scouring the Internet any chance I get... Which is in turn making me downright crazy about symptoms and risks and everything that goes along with it! My husband and I have been hanging on by a thread! Our poor boy has been nearly hysterical with pain since the moment we left the hospital! We failed miserably at breastfeeding between the reflux and jaundice on top of the fact that Ii suffered from post partum depression! It's been the hardest 6 weeks of my life. I'm still mourning the loss of breastfeeding and losing this precious time with my son to all the horrible pain he's been in! I HATE that he's on zantac so young but it's the only thing that has brought him any peace thus far! I'm nervous about the risks but my gut tells me that the constant pain he was in would be just as detrimental to his health and well being as this medication could potentially be. I am actually talking to a chiropractor tomorrow about the possibility of getting him weaned off the meds per her help/woek on him. I've heard wonderful things about chiropractic work doing great things for reflux.

I can't imagine how you must feel when your baby holds their breath! I would be so scared! I'm always scared enough because he chokes on his formula so often. I'm a nervous wreck during feeding and Iknow it's not good for him to feel me that way! How old is your child? When did you realize that your child had reflux? Did your pediatrician validate your suspicion? Ours chalked it up to colic and me being a nervous first time Mom for weeks! I was furious! LOL anyway sorry for the rant it's just so good to not feel so alone in this! I never even knew reflux could be such a HUGE issue and be so painful for babies. Maybe we can stay connected? Keep one another updated??

 

[BabyDragon]

Definitely keep me posted on how your little one is doing!

It makes me so anxious and practically guilty knowing that I am the voice of my LO and I feel as though I can't help her enough when she is so darn vulnerable. I too have been scouring the Internet like crazy but now it's the hard part... Getting a professional to really listen and help instead of just brushing me and her off as a neurotic first time mom, or her as just being colicky.

I understand all your feeling! I started to suffer from depression even before she got here, but I didn't want to be medicated because I too was breastfeeding. She was also slightly jaundice at birth and lost so much of her birth weight, I was talked into supplementing with formula because she would go 24+ hours without producing any dirty diapers.

We had a dramatic birth that ended up in an EMCS, and I got sick shortly afterwards with what I thought was a bad case of the flu, which turn into severe mastitis, me being hospitalized for 5 days on heavy duty antibiotics, having to get my breast aspirated twice, and finally surgery, which ended my breastfeeding. And because of the time away from LO coupled with the depression, I believe it totally interfered with our bonding.

When I got home, I started to notice all the signs of her not being okay. I then noticed the bad case of thrush she had, probably from me taking antibiotics and breastfeeding her.

I thought the awkward feeding was because of that... But I couldn't ignore all her other symptoms of reflux.

As soon as I brought it up at her check up, right away the doctor just jumped at medicating her...

Now I'm so confused because then the doctor at the hospital basically contradicted everything her pediatrician said, mainly because LO is the one who screams for her bottles, yet fights it, but constantly wants to eat, probably to help ease the pain through eating, and hence gaine more than her birth weight already at 10 weeks. She will be three months on Monday.

I'm so frayed at trying to do everything I can help her. I already feed her every 2-2 1/2 hours, switched her bottles to dr. Brown, switched her formula to similac sensitive, burp her during and after feeding, holding her upright after feeding for as long as I can, elevating her head, etc, but nonetheless, she still wakes up screaming in pain.its heart breaking to watch her sleep, and see her face suddenly scrunch up in agony, her bringing p something in her throat, and her noisily swallowing, and then grimacing again in pain.

Please, do tell me if the chiropractor has brought your LO any form of relief, and pease do keep in touch!

 

[YouandMe]

BabyDragon I'm so sorry it's been SOOO long since I've been able to sit down and get back to you!!! When you wrote this...(I'm so frayed at trying to do everything I can help her. I already feed her every 2-2 1/2 hours, switched her bottles to dr. Brown, switched her formula to similac sensitive, burp her during and after feeding, holding her upright after feeding for as long as I can, elevating her head, etc, but nonetheless, she still wakes up screaming in pain.its heart breaking to watch her sleep, and see her face suddenly scrunch up in agony, her bringing p something in her throat, and her noisily swallowing, and then grimacing again in pain.) ......

That's EXACTLY like my son! I could have written that myself!! We had out first appointment with the chiropractor today, she pointed out many spots that were swollen on my son and he winced when she touched them so I know it's for real!! She said all these spots coincide with a reflux diagnosis so it all does makes sense. When she started working on him he went from his hysterical screaming in pain to cooing and smiling!!!!!!! He absolutely loved it, we go back tomorrow to get a scan of some sort to check everything out on him and see what the plan of action will be. I am so excited but so nervous at the same time, I don't want to get my hopes up too much just yet! It would be a miracle if she could get him off the Zantac and not be in pain!

How are you and your little one holding up?? I'm so sorry to hear all the trauma you two went through after birth! I wish I could be breastfeeding but everything got so messed up so quickly! From his jaundice, my depression, his loss of weight, the reflux, and his inability to latch we just couldn't keep breastfeeding. NOW he's in the 95th percentile for his weight because he is a comfort eater! As bad as it hurts him after a feed all he wants to do is eat to soothe his throat! He was 2 months exactly Friday May 10th and he weighed 14lbs 14oz!!!!! Can you believe it?? He's not chubby at all barely even has a roll or two on his legs so I don't even know where it all went to! LOL

Your little girl is on zantac too right? Has it been helping, how much is she taking? I HATE the idea of my son being on medication but here's hoping the chiropractic work can help him enough to get off it and feel great!! I wish I had more time to keep up a little quicker, I'm sorry it's taken me so long! There's never enough time in a day, he's in so much pain he pretty much gets held ALL DAY LONG! I was sleeping with him on my chest every night because he would sleep no other way! We finally ordered the tucker sling and wedge and it's been a GODSEND! It was worth all the money because he can sleep on his own now, it's very restless and he still wakes up screaming in pain but at least he's safe and getting SOME sleep now!

 

[BabyDragon]

OMG, your LO sounds just like my little one! She too is a comfort feeder! She too went from being in the 15th percentile to the 90th! She was born at 6lb 1oz, and at her 2month check up, she weighs a whopping 12lbs, 10oz! But she has the rolls to prove it! lol.

She's doing much better now that we're more vigilant at doing everything we can. I really wanted to get her the nap nanny, but apparently that was recalled. . So as a quick fix, I went out to babies r us and bought a wedge that is inclined to 30 degrees but I'm not a big fan of that as not only does she slides down, she falls side ways....so to remedy that, I had to roll a blanket to put under her butt and another wedge pillow on one side of her... I'm going to have to look into your tucker sling!

She is on .8ml of Zantac 2x a day, but I'm not sure it helps as she still seems in pain...

But then again... I just realized yesterday that she's teething!! Last week, I kept thinking she was getting sick as she felt warm and was taking her temperature repeatedly... Then I noticed her cheeks were red and warm to the touch too and I was a bit worried...

Coupled with the fact since she discovered her hands, she keeps trying to eat them! But then she graduated to just rubbing a spot repeatedly, and LO and behold... I believe I see something shouting on her lower front right!

I'm going to have to look in this chiropractor thing! That sounds amazing!

Please keep me updated on how it is working out for you!

 

[bababel]

Honestly, don't worry yourself over it. My son had reflux when he was a newborn until he was about 4 months old and it was classic Sandifer's-looking. He turned his head and arched his back and screamed at each feeding. I thought there was something seriously wrong with him. When I took him to the pediatrician, she didn't even know what Sandifers was, but she did say that his symptoms were "classic reflux".

The pediatrician gave him reflux medicine but he had a reaction to it, so we decided to just elevate him for an hour after each feeding. We did it until he was 4 months old and then stopped doing it. It just went away on its own and that is what almost ALWAYS happens with babies.

Young babies have reflux because their digestive inner workings aren't very mature. Once everything in their tummies gets to be a bit more mature, they stop having the reflux.

In the end all we needed to do was make sure that Cooper's upper body was elevated after each feeding, and it went away on its own. We also made sure he had a good burp too.

Watching those videos is really not the best idea. I had myself worked up because of them and in the end it was just regular reflux. Your baby will be fine!

 

[kettle28]

Sorry to jump in, our lo had a terrible first 8 weeks, we knew def was reflux but couldn't get Zantac til we took him to casualty one night!

It turns out he's allergic to cows milk! That was making reflux worse!

Now on neocate and Zantac and he's a different baby, hang on in there, and maybe worth asking the allergy question of your doctors? Reflux and allergy symptoms are sooo alike x

 

[YouandMe]

Honestly, don't worry yourself over it. My son had reflux when he was a newborn until he was about 4 months old and it was classic Sandifer's-looking. He turned his head and arched his back and screamed at each feeding. I thought there was something seriously wrong with him. When I took him to the pediatrician, she didn't even know what Sandifers was, but she did say that his symptoms were "classic reflux".

The pediatrician gave him reflux medicine but he had a reaction to it, so we decided to just elevate him for an hour after each feeding. We did it until he was 4 months old and then stopped doing it. It just went away on its own and that is what almost ALWAYS happens with babies.

Young babies have reflux because their digestive inner workings aren't very mature. Once everything in their tummies gets to be a bit more mature, they stop having the reflux.

In the end all we needed to do was make sure that Cooper's upper body was elevated after each feeding, and it went away on its own. We also made sure he had a good burp too.

Watching those videos is really not the best idea. I had myself worked up because of them and in the end it was just regular reflux. Your baby will be fine!

I understand it is something that most children go through in the beginning but the problem is not ALL children are in the pain my son is in. Hence "silent reflux" it comes up and goes back down giving him TWICE the burn. It was gut wrenching to see my son go through that much pain. Thank god the zantac is helping with the pain though!! And hopefully we'll have him off that soon with the chiropractic help. We keep him elevated for an hour after every feeding too, and we're very careful not to lay him flat often at all. We also feed him soy and in smaller more frequent meals. We've done it all. I've researched it all. For hours and hours into the night, which is when I came across the sandifer syndrom, and believe me I PROMISED myself NO MORE googling things!!! LOL I've done all that I can do and now my only job left is comfort him and wait it out hoping that between the meds and chiropractor he will not be in the same pain he was in for the first 6 weeks of his life. Poor baby! Thank you for your reassurance, it is great to hear from others have been gone down that road and can turn around and say "look it's rough but you'll get through it!"

BabyDragon, we have the tucker sling you should check it out. It's a fabric wrap that has amazingly strong velcro to keep around little one, and is sewn onto a quilted piece that fits around the wedges so baby doesn't slide down. It was a god send for us! He would get SUPER congested and gasp for air all night long without it! How old is your little one now?? I'm sooo nervous to go through teething I know it's hard on normal babies and I hear it's terrible for reflux babies!! I'm wishing you and your little one some peace and loove to you! It's so good to talk to people who have been there!!! HUGS!