Sandifer’s Help

[Anonymous]

First off let me introduce myself. I’m Carol, mommie to Arabella Jean who just turned 3 months old on the 14th.

I see how much this is discussed… and I know it’s a forum for this Syndrome but I kind of feel like a bug… so I apologize ahead of time. I just want some kind of reassurance or acknowledgement that this is what is effecting my daughter.

I figured that my daughter had reflux as she always had the sour look on her face and would scream and buck while eating after we switched to formula from the breast at 10 weeks. I figured at first that it was because it was formula and not breastmilk, so I thought it would get better. I had her on the Enfamil Gentlease at first thinking that would help her gassiness, as she’s been gassy since birth. It seemed to make her fussiness and pain worse so we went back to the normal formula and it seemed to improve to some extent.

I finally got to the point were I couldn’t take it anymore. I hated for my baby to be in pain and I had stuck it out for 3 weeks and it wasn’t getting any better. I called the Pedi… I couldn’t get in for a full week I was at my wits end. I called my family doctor who had seen Arabella previously and asked him if he could see her and do something about this problem. He called in a prescription for Zantac.

She has been on the Zantac for a week… but at a small dosage only .6 mL’s twice a day… I noticed an improvement within 2-3 days… I have now started to notice that she is reverting back to having the serious problems during the feedings like she was.

I went to the Pedi today and he totally agreed that she had reflux and upped the Zantac to .8 mL’s three times a day.

After discussing somethings I mentioned to him that she would buck while eating… she would seem to push off the boppy or my leg with her feet and she would throw her head back. I quickly have to put the bottle down to make sure she doesn’t push herself out of my arms. She also turns her head to one side while doing this. I do confess that when she had these episodes that it isn’t always turning to the same side, but while we have her up and sitting 9 times out of 10 she is looking to her right side. But… when she sleeps she will sleep on both sides of her head, she sleeps on her tummy… it’s the only way she’ll sleep.

I’m so tired of having my baby be in pain. It’s stressful to me during the feedings when I can’t figure out what is wrong with her, why she won’t eat, and why she is screaming!

She almost never eats more than 2-3 ounces at a time… and I’ve noticed that babies at her age are at least eating 4-6 ounces at a time. Some days it’s hard to get her to eat the 2 ounces. I let her eat until she screams… my Pedi agrees that she’s not being overfed, but that she is still gaining weight. He told me that they don’t really start to worry about the reflux unless they are not gaining weight, aspirating the spit up, or they won’t eat at all.

I also noticed in a post someone mentioned what they thought was “rapid eye movement” I’ve noticed Arabella doing this almost from birth… my Mom told me that was normal since babies don’t have full control over there muscles, but I’m still noticing it… she doesn’t neccessarily roll her eyes into her head but she does the quick back and forth movements with hers… not when she is bucking though..

I believe that this is a big enough problem to go back… BUT he did agree he wanted to see her again in 2-3 weeks to see how she was doing. After reading through some of these posts I wonder if I should be getting an appt. with a GI specialist instead of waiting.

I talked with my Mom tonight and she agreed that we would wait at least a week to see how upping the medicine does for her… to see if it will revert back to how she was before as it did this past week.

I guess my point of this post to see if this could really be Sandifer’s and if I should be scheduling an appt. with the GI specialist instead of waiting around to see if the Zantac works….

Really I’m very confused… and a bit worried… I just want a little reassuarnace from some mommies who have gone through this… and maybe a “yes this sounds like Sandifer’s” or a “no this just sounds like reflux”…

Thank you in advance ladies!!! I much appreciate your time reading this and responding!!!

[Anonymous]

Hello and welcome,

I’m not sure about the eye thing….hopefully some other moms here know more about that. The rest of what you describe definitely sounds like refux and sandifers.

I definitely think you should make a gi appt right away. It usually take a while to get in and you can always cancel if things improve.

In the meantime I’d work on getting her on a PPI medication like Prevacid or Zegerid. Most of us have found Zantac to be quite useless. http://www.marci-kids.com has some information about PPI meds for infant reflux. Many doctors (most really) are not aware of the current research about PPI meds for infants and are afraid to prescribe them or prescribe in doses which are way too low. You may want to print and fax or bring the marc-kids info to the doctor. That’s how I finally convinced Myles’ doctor to put him on the right dose of Prevacid and then things finally turned around.

For now you can try some Mylanta Cherry Supreme before feedings. Many moms here have had success. I’m not sure how much but I’ve read here that too much will cause loose stools. Hopefully someone else can give you some dosing information.

Laura, if you read this…where can we find dosing information for Mylanta Cherry Supreme?

Good luck and glad you found us. I hope things are better soon.

[hellbennt]

hi there- I don’t really have anything bookmarked regarding dose- I’d give up to a teaspoon (5mls) over the course of a 24hr period, given in 1ml doses as needed throughout the day…you know it’s too much if it results in loose stools- but it’s safe & you really cannot over do it…

as for sandifer’s: it’s not something to be scared about if you’re addressing it– the proper dose of medication will make it go away– I’d look up hte ‘proper’ zantac dose (go to Prevacid 101- purple post in the link that’s stickied under Medicines called ‘treating GERD w/ PPis’ and start from there- of course I recommend a ‘proper’ dose of PPI! but in the meantime it’s important to make sure miserable baby is at least getting a proper dose of zantac

also: go surf/skim through ‘groupie intro’ bookmarked in Introductions- a lot of info is addressed there

[Anonymous]

Hi Carol,

To answer your question, yes, I do think it sounds like Sandifer’s. Hailey did all the things that you describe, even the eye rolling… usually for her it was eyes rolling up and down with sort of fluttering eyelids. She was officially diagnosed with Sandifer’s by having a normal EEG to rule out seizures, but we pretty much knew before that. Unfortunately, many of these behaviours can be other things as well, so it’s best to talk to your doctor. I would try to catch the behaviours on videotape and then show them to your physician to get his opinion.

The truth is, is that whether it’s Sandifer’s or not really doesn’t matter too much (in my opinion). Sandifer’s is just another pain response, but all of the other behaviours that you describe- the bucking, and feeding difficulties, fussing and crying with feedings- these symptoms alone are enough to indicate that your baby is having pain and in need of relief.

As you’ve heard already, zantac is very weight sensitive and it’s not uncommon for babies to do well on a dose for a short period of time, and then outgrow the dose. I agree with Christine that you might want to look into getting your daughter on a PPI. Feeding difficulties can spiral out of control if not treated properly.

I don’t mean to scare you, but my daughter started off on zantac, and then to a subtherapeutic dose of PPI. For the first two months her feeding difficulties were similar to those that you describe- pulling off the breast (and later the bottle), crying during feeds… she also choked, sputtered, and was chronically irritable in addition to all the arching. I could never get more than 1-2 ounces into her at that age, and then one day she suddenly decided that it hurt too much to eat and that was the beginning of our horrific feeding aversion nightmare.

I have to say that I really disagree with your ped- reflux is a problem if the baby is showing signs of pain and if that pain is interfering with life as it should be for a baby, regardless of issues pertaining to weight, aspiration, and failure to thrive. No one considered my daughter’s issues to be significant because she was gaining weight. Even when she stopped eating and we had to sleep feed her, they still looked at her weight and felt that everything is fine. I honestly believe that if someone had taken us seriously and prescribed her a decent dose of PPI BEFORE all of our issues began, then we could have prevented a lot of the issues that we’re still dealing with now.

I would certainly look into getting an appointment with a ped GI. As Christine mentioned, these appointments can take time. Beware that even as far as ped GIs are concerned, many do not take reflux seriously and underdose medications and minimize symptoms. You might want to take a look into Laura’s into (stickied under the introduce yourself forum) and scroll down a little bit to where it talks about looking for a ped GI…. several people who have visited this forum have posted their doctor recommendations there, and maybe that can help you in finding a good doctor.

Good luck to you. I hope that things improve for you and your daughter soon.

[Anonymous]

Hello to Carol and everyone else! My name is Johanna and I believe that my son, Jacob, has Sandifer’s (age 4 months). It has been a long few weeks, as we first brought him to the doctor because we suspected torticollis….then a week later we were back because I suspected acid reflux….only to find out a few days later that he may have Sandifer’s. Each of these issues I discovered completely on my own via internet research. He is currently on Prevacid, but I think our doc will be referring us to a specialist now that I believe he may have Sandifer’s.

Carol, I wanted to share with you the Mylanta dosage that my doctor recommended. She said 1CC (ml) before each feeding.

Sandifer’s is hard to find information on! A few questions for anyone who thinks they can help. First, can Sandifer’s just appear? Or are babies born with it (and the corresponding symptoms)? I am feeling really guilty that he may have had this all along and I somehow did not notice!

What is the typical dose of Prevacid for babies with Sandifer’s?

Finally, do all babies with suspected Sandifer’s get referred to a GI specialist, or not necessarily? And what can I expect at this appointment?

I am sorry for all of the questions, but am SO relieved to have found this forum! It makes me feel less alone.

Love,

Johanna

[Anonymous]

Hi Johanna. Welcome to the site. You might want to copy and paste your reply into the introduce yourself forum and see if you get more replies there.

I’m sorry that you are going through all this with your son. I certainly wouldn’t feel guilty about anything. It is great that you are out there trying to find answers for your son. That alone makes you a great mom.

I am no expert on Sandifer’s, but my dd does have Sandifer’s. She had it from very early on, and even now, she still does have symptoms (but our doc seems to think that it might be behavioural at this point as she had a clear scope). Her Sandifer’s was diagnosed by process of exclusion using an EEG, meaning that when her EEG came back normal, they used that to confirm the Sandifer’s diagnosis.

As you may have read, Sandifer’s is a pain response to the acid coming up, and so it can come and go at any time. It corresponds to the symptoms, and so it is not necessarily something that they are born with (unless they are born with an out of control case of reflux which is possible too).

As for prevacid dosing, this is kind of a controversial subject. Some docs believe in conservative dosing, but more recent research does seem to suggest that babies need higher and more frequent dosing of these meds as they metabolize them so much faster. My daughter never got any relief until she was put on 30mg of prevacid around 10 months. But it was a fight to get the docs to prescribe her that dose. How much is your son getting? What form is it in? If it’s the solutab or capsule, are you giving it on an empty stomach and following up with a meal 30 minutes later? That’s needed to activate the drug. If it’s a compound, you can give it any time, but need to make sure that it’s prepared properly as it tends to be notoriously unstable. There is a great site http://www.ppiknow.com that explains this very well.

There’s another website http://www.marci-kids.com which I also really like. It has all kinds of information about acid reflux disease, Sandifer’s, meds, and questions and research relating to PPI dosing. Beware that the dosing that you see on that site will likely be much higher than what you have heard or been told by your doctor or pharmacist. Marci-kids is a group that does research on acid reflux in children, and they recommend high and frequent dosing of PPIs in order to control reflux symptoms. Since PPIs are quite safe medications, they advocate such dosing to ensure symptom control. You might want to review the information and their literature and see what you think. There is a link on the top left hand side of their page which I believe in entitled “PPI memo” or something like that, and it contains information that doctors can use as a guide for dosing PPIs to infants and children if they want a rationale beyond the marci-kids guidelines. As for a “proper” dose for babies with Sandifer’s, I don’t think there is one, since it’s quite individual. But my personal opinion is that if your baby has Sandifer’s then they might need a higher dose to control their pain.

As for GI specialists, not all babies with Sandifer’s get referred, though they probably should. At our GI appointments, they’ve always taken a history, weight, length, medical exam, asked about symptoms, strategies that we’re using to try to control things, medications, and further needs for testing or intervention. Hailey’s always had Sandifer’s, and we’ve seen many docs, but few have really cared about it. So if you’re concerned, you may have to push your doc for action, whatever that may be. Even among GI’s some are aggressive when it comes to reflux, and some take the “as long as they’re gaining, it’s fine to wait it out until they outgrow it” approach. I personally am an advocate of the first.

Laura, our forum moderator, has a great intro with tons of info in it on Sandifer’s and meds. If you go under the introduce yourself forum, you’ll see it stickied as “groupie intro”. From there, scroll down to “prevacid 101” and there’s all kinds of info about meds. It’s tons of information, but if you graze through it, you’ll be able to pick out the points that apply to your situation.

Welcome again and good luck.

[Anonymous]

Hello and welcome Johanna,

I’m sorry things are so hard right now. I’ve had two refluxers so I sure know how hard it can be. Don’t feel guilty about not noticing his sandifers right away. Like Lori said it’s a pain response and may not be present right from birth. Also, my babies all seemed perfectly normal at birth and I didn’t realize anything was wrong with my first refluxer until she was 10 weeks old though symptoms were definitley present early on. I thought it was a nursing issue. With my second reluxer I still didn’t catch on until he was nearly 4 months old becasue his symptoms were not exactly the same as my daughter’s. If only they could tell us what’s bothering them!

Anyway, I agree with all Lori has said. My son also did not respond until he was on the high dose of Prevacid that http://www.marci-kids recommends, but I had to fight to get him on it.

I wish you the best and hope your baby is feeling better soon.

[Anonymous]

I just wanted to remind the two newer parents that Sandifer’s Syndrome, is NOT like Downs Syndrome – You don’t have it for life. It is a neurological response to the acid burning the esohpagus and triggering the seizure-like reacation. My son bucked around so much, I could barely hold onto him. He did occasionally have the left to right quick eye movements in the first two months of his life. The bucking and arching went away when I started Logan on Prevacid and you have to make sure it is given more than once per day, because it will wear off. Here’s the direct link on explaining sandifers on the marci-kids website: http://www.marci-kids.com/rigidbodyposturing.html they even have animations at the bottom.

[Anonymous]

I think many refluxers also have Tracheomalacia and Laryngomalacia, please see my posts under the Respitory topic on this forum. I think the opening of the airway is in addition to the sandifer’s symptoms, so I guess, I’m just trying to say that there is often a respitory issue along with the esophageal issues.

In tracheomalacia, the supporting structure of the trachea is too floppy, resulting from weakness of the tracheal walls. In addition, the posterior or membranous portion of the trachea, which does not add support to the trachea, may be wider than normal. Patients exhibit an expiratory stridor, which may resemble wheezing. During heavy breathing, the membranous posterior wall advances anteriorly, where it may approach or even touch the cartilaginous anterior tracheal wall, thus markedly reducing the airway lumen. Symptoms are more prominent in an older infant as the respiratory movement increases. Therefore, posterior tracheal wall migration increases as well. As a result, the affected infant may hyperextend his neck in order to adequately keep his airway open.

http://www.emedicine.com/ent/topic325.htm

[Anonymous]

On the eye movement – Matthew did this during and after feedings for around 5 months! And then one day it went away. It scared me to death – he would flicker his eyes from left to right really quickly like he was out of it. The ped saw it and he said it would pass, it was just a response to eating.

[Anonymous]

Thanks to everyone for your responses! It has been really great to read about everyone’s experinces and opinions. I am not sure what I would do without you all. It’s been great knowing that there are others to lean on….we really need it lately.

The 15mg of Prevacid seems to be kicking in and Jacob has been doing much better in the last week, although not completely better by any means. My doctor keeps on making other suggestions and seems hesitant to send us to a specialist….frustrating! So, we started adding rice cereal to his bottles two days ago to see if that would help. I don’t know if it’s possible, but to me it seems that it is making him worse. The other big problem (and it seems that this is nothing new to anyone!) is nightime….it is the worst! We are practically up all night. This acid reflux thing is the pits!

Johanna

[hellbennt]

JohannaC wrote: …So, we started adding rice cereal to his bottles two days ago to see if that would help. I don’t know if it’s possible, but to me it seems that it is making him worse…

you can do a search about thickening, as with most things reflux, there are pros & cons…HTH

[Anonymous]

Hang in there Johanna… this too shall pass.

[Author]

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