New, confused, sad and frustrated

[Anonymous]

Let me first start with saying “hello” and I never thought I’d find forum like this, but someone out there has to be able to shed some light on my situation for me. I’ve been doing so much reading about Infant Reflux that my heart goes out to those with far worse situations than my own. I just simply do not understand what is happening to my daughter and doctor’s are somewhat dismissive about it.

My 2nd daughter Brynn was diagnosed with Sandifer’s Syndrome at 2 months old. She is almost 10 months old and I still have very little answers to any of my questions. She spit up frequently and would “position” herself in this Sandifer’s “way” for an hour or more. This has happened 5 times in the last 6 months. The spitting up seemed to get better and I was beginning to stop the Axid she’s been on since 2 months. Until last month it seemed to get worse.

Anything I can find on Sandifer’s is in association with severe GERD and by every doctor that has looked at Brynn indicate that her reflux is mild! Than how does this “positioning” come into the picture? She eats well, most of the time and has gained weight like a champ! She has “episodes” of reflux. Recently I thought that maybe the solid food I began last month started the episodes again, so I went back to oatmeal and rice cereal. That seemed to work better, until today, she went back into positioning herself and has thrown up forcefully 3 times. She is so lethargic, I feel awful. My husband and I can’t do anything but hold her.

Doctor’s have not helped at all, because she doesn’t have symptoms common with severe GERD, they just tell me she will outgrow it. They said it would be better by 6-8 months and now it’s worse. They have no answer for me and I’m not sure what to do next? Does anyone know more information about Sandifer’s? Does anyone have any advice or understanding that can help me understand how to help her? I feel so helpless and frankly sick of explaining to unconcerned Doctors!

[Anonymous]

If she is lethargic and throwing up, I would take her to the ER. Does she have a fever, or is she dehydrated from the vomiting? Either way, I would go get her checked out. I know you are frustrated, but reading the lethargy, that would make me first and formost concerned. Maybe, there could be a GI on duty in the hospital that would do a consult and then you could get a second opinion immediately regarding her GI.

Sorry to not be of help in other ways right now, but the fact she is lethargic would make me think you should at the very least call your doctor and explain that symptom specifically. I am in no way a doctor, but that would be my very first concern.

[Anonymous]

I agree with Ann Marie,

The lethargy is concerning. She may some type of bug or even the flu and sh emay be getting dehydrated b/c of the vomiting or something. I would take her to get looked at sooner than later to make sure something else isn’t going on. Good Luck.

[Anonymous]

I took Brynn to the Doctor again! He thought that she has a bug that caused the vomiting, but still insists on her reflux as being “moderate”. He upted her dosage of Axid and told me that the Sandifer’s is simply a neurological response to the pain she feels whenever there is an issue with her stomach. He doesn’t think it is always brought on by the reflux. He thinks she’s just highly sensitive to pain.

He was probably the most understanding Doc that I’ve seen yet, but still I have no answers. He just encouraged me that she would grow out of it.

Is there any type of food that I can offer her that would help, ie yogurt or something?

Thank you for your concern. It was so appreciated.

[Anonymous]

My son’s Sandifer symptoms would come and go, and when they were present, I knew that he was in pain and needed his medication adjusted. If her body is responding to pain that way, then it sounds like the Axid just isn’t cutting it for her.

Have you asked the doc about a PPI, like Prevacid or Zegerid? PPI’s tend to help our refluxers the most, as the ph blockers, like Axid are very weight sensitive and babies tend to hit a plateau on them.

[Anonymous]

I should have found this Forum 4 months ago!!! Yes, just yesterday at the Doctor’s office, FINALLY a competant Doc said that her dosage needed to be adjusted. I was giving her 1/2 of what I should have been giving her. Hopefully this new dosage will help her, if it doesn’t he said that he would change the script to something a bit stronger.

Does your son’s Sandifer’s symptoms hang out for several hours, kind of in and out? I know every baby is different, but everything I’ve read about this syndrome says it lasts 1 or 2 minutes. Brynn has been positioned for an hour or more!

[Anonymous]

Hi, and welcome!

I was wondering what foods are in your daughter’s diet? A lot of our little ones with reflux and sandifer symptoms are unable to tolerate cow’s milk (through breastfeeding, formulas, cereals, solids, etc.) and sometimes soy as well. Also, some have difficulty with solids as well and do better if solids are left out of the diet until they are older and the GI tract has “matured” so to speak. My daughter improved a great deal once we got her onto a milk/soy free formula. Or if you are breastfeeding, many little ones do better if mom eliminates all sources of milk/soy from her diet.

You may already be doing some of this, but I didn’t want us to overlook a potential source of discomfort for her. I hope you find some answers and that she begins to improve soon!

[Anonymous]

Oh my Goodness! That is the first time I ever heard that. She’s been on Enfamil AR. I nursed her for the first 5 months. Thickening my breastmilk was getting old, so I switched her to the AR. Why would no one ever mention the possible milk issue????

What other options are there besides Soy or Milk?

I told you I should have found you all sooner!!

[Anonymous]

Beth, if you think that the MSPI (milk/soy protein intolerance) is a possibility, my first suggestion is to switch formulas to a hypoallergenic one, like Nutrimagen or Alimentum. These are pricey, for sure, but it could really help Brynn. It could take several weeks, however, for any of the old milk proteins to clear her system, so you may not notice any improvement until then.

Both of those formulas, though hypoallergenic, do contain some milk protein, and some babies can’t even handle that small amount. If it should come to that, then Neocate or Elecare are the next option. These are usually prescribed by the doctor and often covered by insurance as they are SUPER expensive.

If I were you, I think I would only try one change at a time, so that you know what is truly working or not working. Perhaps cutting out her solid foods for several days would be a good option first. If you don’t notice any difference in her comfort level, then maybe try switching formulas next.

It’s really a very frustrating guessing game. Hang in there.

[hellbennt]

the Sandifer’s should stop once on a proper dose of PPI/

http://www.marci-kids.com

has the latest research & doses for infants.

[Anonymous]

I think Naomi is right in suggesting trying one change at a time so you know what seems to help and what doesn’t. Perhaps after a week or so of an increased dose of Axid and limiting the solids as you have been, you might see good improvement. If not then if might be worthwile changing to a “hypoallergenic” formula like Alimentum, Nutramigen or Pregestimil. And also might be worth a change in medication as well – as others have mentioned PPI type meds have helped so many of our little ones who just didn’t receive adequate pain relief from H2 blockers like Axid and Zantac.

Milk/soy protein intolerance (MSPI) and multiple food protein intolerance (MFPI) can result in symptoms of reflux (and subsequent sandifer’s), vomiting, irritability, poor sleep, rash/eczema, mucus in stool, blood in stool, nasal congestion, recurrent ear infections, to name a few. If you have noticed a few of these symptoms (on top of the reflux/vomiting/sandifer’s you’ve already mentioned) then it certainly is a possibility that she may be reacting to the formula or certain foods in her diet. Here is a link I found helpful:

http://home.vicnet.net.au/~disa/Food%20intol-alergic%20baby.html

Hope that helps!

[Anonymous]

What an amazing Blessing you all have been. Such wonderful advice that all my research could not turn up! Thank you so much for all of your input. I am taking all of your advice. I’ve started with removing some of the solid foods I was giving and increase in Axid. I will absolutely check into a different type of Formula and/or med if my current changes don’t show improvement in her in the next week or two.

So far, she is doing great! I know it has only been a day, but she was so pleasant all day. Although, she’s been up twice already tonight since putting her to bed. Every moment that she seems not to be in any discomfort is a gift!

Thanks again!

[Anonymous]

Sherri,

I went to the site you sent me about food allergies, I really think she is allergic to Milk Protein. They suggest the Nutramigen also. Can I just try it, do ya think?

I am so aggravated that none of the Doc’s I’ve seen for this have ever mentioned it! I really don’t feel like even asking them what they think. I feel like I’ve gotten more info by contacting this Forum than I have gotten in 8 mo and 16 doctor’s visits and to many calls to count!

Changing her Formula wouldn’t irritate her condition, would it? I know that you are not a doctor, but I believe that mom’s that are experiencing or have experienced these issues are better equipted to answer some of these questions than some doctors. Any further thoughts I would so appreciate.

Beth

[Anonymous]

I check out the food allergy site. I really think that Brynn has Milk Protein Allergy. They recommend the Nutramigen also. Do ya think that I can just try it? It shouldn’t irritate her if I’m wrong, right?

I truly have no desire to discuss this with any of the Doc’s I’ve been dealing with, since NO ONE has ever even mentioned this! I’ve truly learned more in two days on this Forum than I have from the last 8 months, 18 Doctor visits and too many calls to count! Not that I will never discuss this with them, but I really think that mothers who are living it and have been through it with their little angels pain, are the better equipted to answer questions than any doctor!

[Anonymous]

Sorry about the duplicate posts. The site told me there was an error, so I didn’t think the last one went through. Sorry.

[Author]

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