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Wednesday, May 21, 2008

Please help solve our vomit issues...

SEE UPDATES AT BOTTOM OF POST:

So many of you read my blog out there, that I'm pleading for help. I'm at my wits end. Kaitlyn continues to vomit and my docs don't seem to have any answers (I've given up in the past about getting an answer) but I was hoping and praying that it would just go away. It's not going away. it's HORRIBLE. This is our life. It SUCKS. It sucks for poor Kaitlyn . It sucks for mommy, daddy and Julia too. (our nanny). Please help us!!

She's still phlegmy! And the the phlegm is what causes her to vomit. Here's an example....
Called: "All Done Vomit"




She does this typically every day. Oh and did I mention that after she finished eating, she vomited again in the kitchen sink??? Well my nanny was able to catch her before she vomited and carted her to the sink (you become very experienced at knowing when when she's about to vomit the the pghlemy sounds she makes.) I actually heard pre-vomit sounds from my office, found my camera and caught the above vomit on film.

We work soooooo hard to get the meal in her and then to have her vomit it all back up, and pour it down the drain... it's a waste of everything, the food, the money, the time, our45 minute efforts per meal, her ability to gain weight not to mention poor little Kaitlyn having to "get used" to this and damage to her teeth and esophagus.

If you have any suggestions as to what we can do to eliminate the phlegm I will be eternally grateful!

Update post otherwise:

I think I had mentioned that Kaitlyn got sick AGAIN, the 3rd time in about 6 weeks. Luckily she only lost a tiny bit of weight and we continue to NOT doing night time feeds! This is huge. We've even been able to get a few oral meds in her (this could never happen before, as she gagged and vomited it up (along with anything that she had eaten before)....so maybe, maybe we can take out the tube in the "near" future? Now we still give her 2 tube water/drug feeds each day. One at night one during nap. Right now it's not bad having it, just knowing it's there is a relief actually, just in case. (and I have to say, it was quite nice to giver her Tylenol when she was sick at night without having to wake her up - hey trying to look at the bright side of having a tube)

I switched her back on to Prevacid Solutabs (for reflux) as her breath smelled horrible and I worry about acid damage....it doesn't seem to make any difference in her pghlem (and vomits). (wonder if it's worse?) As I recall last time I removed the drugs, she was less pghlemy?

I had a frustrating time last weekend, I went to a good friends 3 year old birthday party and when all the kids sat down to eat, I was hunched over (Not easy being pregnant) sitting on a child's chair on the other side of the room trying to feed Kaitlyn and became very jealous of how easy it is for the other parents. Pity party here (warning), but I have to say when I'm at home feeding her I don't "realize" how easy others have it sometimes. I think it's why we rarely go anywhere.... it's just a lot of work to feed her. A LOT of work. Now that she's older it's much more noticeable how different she is. I came home very bummed out. I hate feeling this way. I wish I could just be happy-go-lucky and not get jealous, but I have a hard time with comparing my daughter and my situation to others. Does that make me a horrible person? I feel that way.
I also spent the entire time chasing her around, no sitting down calmly for Kaitlyn doing art projects...she rarely sits down calmly....My gut still tells me that she has developmental issues, she seems very different to me than other children her age (or even age 2).


Yes, I tried to sit her down, even thought she said "cake" she wouldn't sit and have anything to do with food and joining the group.

OK, enough with the pity party....

My pregnancy:

I'm 26 weeks today! Wow. I delivered the twins at 26 weeks and 6 days. I had been in the hospital by this point for a week already and had been on bed-rest for almost 10 weeks. Here I am up and about with no seemingly complications (except of course that my placentia is completely covering my cervix and could start causing serious issues at any time (or no issues). I have a ultra/sound today, so wish me luck on it clearing! I feel great pregnancy wise. With twins by this time I was having a really hard getting comfortable and sleeping (maybe had something to do with the fact that I never got out of bed), but carrying a singleton is so much easier.

I'm stressed over other issues: Maybe it's all hormonal being pregnant, but life's been a bit difficult lately, primarily financially. The real estate market has obviously been hit hard and that has hit our families wallet directly. It's frustrating to work a lot and not make any money. Seems pointless at times. Our house is little, so we are trying to sort and organize to get ready for the new arrival. The kids will both share a room. AS I need my 3rd bedroom for my office (again seems pointless at times)...Brian built closet-built ins to help fit both of their clothes, but then there was no room for my clothes (which took up 1/2 Kaitlyn's closet). Feeling cramped, cluttered and broke. Not a great time personally.

Oh again, enough with the pity party.

Gratitude thoughts: Kaitlyn is eating 100% orally, she's maintaining her weight, she is talking up a storm (hope you enjoy some of that after the vomit fest on the video), I am pregnant and I'm still pregnant, We are all healthy, We have a lot of friends and family who love us and care about us. (oh and just realized I've had over 200,000 visits to my blog since it's inception!) wow!


UPDATE (5/25):

Thank you all for all of your suggestions/ideas, please keep them coming. Many of you have had questions, so I'm going to give some more detailed medical background of our vomiter:


-No nissen, we've refused. The GI has been ok with us not doing one, as K has gained weight on her own little nice chart (albeit with a LOT of work on our part making up for the vomit). I truly believe this will not help her. I know with a Nissen she would continue to gag and get phlegm - it will just stop the vomit from coming up, but isn't going to solve the problem of the phlegm

-Her left vocal chord is paralyzed from her PDA ligation

-I often take her in the shower with me in the morning, hoping it will help clear her pghlem. Also for a while she was on daily morning steroid (Pulmicort) breathing treatments, but it never made a difference in reduction of the pghelm morning vomits.

-She has her tonsils and adenoids (never been looked at), as I hate having her scoped as she is already so oral averse. Does not have ear tubes. She had 2 ear infections this year and 2 last year, minor ones.

-she is a very good pooper, never been constipated, EVER. That's why I've never felt her issue was delayed gastric emptying.

-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs straight at night without vomiting mostly.....she could only tolerate breast milk, any formula and she vomited at night too (this was donated breast milk so it wasn't "dairy free diet" breast milk. Because she never/rarely vomited at night, I've always believed that she didn’t have a milk issue. It's when she's awake that causes more problems. As an infant she slept on in include. NO longer, and was tube fed (BD) laying flat with no problem whatsoever.

-We had tried all the hyper allergenic formulas at one time or another, and no reduction in vomit. (a long time ago)

-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2 weeks, with no difference in reduction of phlegm

-when she was RAST allergy tested (at 14 mo), no milk allergy shown

-never had any other signs of allergy (no blood in stool) no rashes (except for some recent eczema on her feet and ankles)

-I just set an appointment to see an allergist (which is months away)

-it was when we switched to a BD (Blended diet) that her vomiting finally got under control 2-3 times a day and we could much more rapidly give tube feeds and we even were able to get rid of the night pump. We still gave her last BD feed after she went asleep, but we finished by midnight, and she never vomited. Her BD is milk/yogurt based, (again, remember at night we could feed her BD asleep with no issues of vomiting and she was lying flat)

- Her vomits are now one of 3 types: - phlegm induced (she tries to clear her throat and ends up emptying her stomach), gag induced (she's a horrible chewer and often swallows food whole which results in a vomit) or occasionally unannounced reflux type vomit (just comes all of a sudden, but this is VERY rare).

-She's been on prevacid solutabs for almost her whole life (after zantac didn't do anything, nor did prilosec), then again, we never saw any difference with prevacid either (no reduction in vomit, I know, PPI don't stop vomit, just reduce the acid)

-I took her off prevacid about 3 months ago, and felt strongly that her phlegm seemed to decrease. I just started her back on it again, as I'm afraid of the damage to her esophagus/teeth from the vomiting., but I happen to strongly think that it's increased how much phlegm she is dealing with.

-we tried a few weeks on Periactin and went 3 days without vomit and hardly any phlegm (first time EVER), then she got sick afterwards 3 times back to back, so we haven't tried that again.

-she now eats 100% orally, only purees and doesn't "like" to eat, especially when she has all that phlegm in her throat (for obvious reasons) Not a good chewer, although she tries to chew meat, it takes forever, and for us to get calories in we have blend her food

-her lungs are doing quite well all things considered, she doesn’t have asthma, has never had pneumonia since leaving the NICU (which typical refluxers get a lot of pneumonia) (although has had some serious colds that go into her lungs - one time bronchitis) and has had oral steroids a few times.

-She's been on probiotics for years now.

-she never writhed/screamed with eating like you think of "typical" refluxers, not signs of being uncomfortable except the refusal of eating.

-She was on reglan upon first coming home from NICU, no reduction in vomiting, stopped years ago.

-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.

Here are my ideas:
- She needs something to stop the production of phlegm. I think I’m going to take her off prevacid again and see if we get a reduction in phlegm like I think I did last time) as a trial. I'll put her on zantac to reduce the acid damage to her esophagus.

-now that she's not sick any more I'll put her back on periactin

-contemplating trying Domperidone (which I know isn't legal in the US), but my thought on Dom is that it is supposed to speed up processing time of food, don't know if she needs this but I've heard form quite a few other moms that it was a miracle worker for their vomiters. I'd like to know more why this drug was pulled in the US and how much of a dose I should give (Kaitlyn weighs just under 26 lbs)

UPDATE 5/27:
-Mother's intuition...I KNOW her vomits are pghelm related not GERD. I took her off back off the prevacid on Saturday (not much difference in vomiting and pghelm), put her back on 2ml of Zantac (last night) and last night gave her 5ml of Periactin before bed, and LO AND BEHOLD, she wolfed down her hot cereal this morning in 15 minutes, at the ENTIRE bowl (again with us spoon feeding her - we normally Can NEVER get the entire bowl in her due to all the pghelm and knowing she'll vomit if we push it), and NO pghlem and NO vomit!!!!

The question now, should I give her a daytime dose of periactin also? Last time on Periactin I gave her 5ml at night and 2ml at nap time. We had 3 days of no vomit (which was a first ever).

what's causing her pghelm? I know periactin is given to oral averse kids to increase appetite, but it's also an antihistamines, right? Claritin didn't seem to do anything

48 comments:

Princess Abigail .... said...

I do fully understand how you feel .... especially the feeling that everything is 'yuk' and nothing feels particularly 'groovy' right now ... but your closing paragraph shows you value the good things and that you also know you are bound to feel really down in the dumps from time to time just because Kaitlyn is Kaitlyn and Kaitlyn is very precious and so is her health. Sometimes its not easy - and then all of a sudden we (Mom's) get this big burst of 'oh everything is just jiving really' emotion .... Kaitlyn is gorgeous, she's a very very engaging little girl, there IS no-one in the world quite like her, and that in itself is a wonderful priviledge.
Love to the whole family from the Bernard Bunch in France
Abigail

amber said...

I don't know if this will benefit you at all, the video was extremely familiar to the once daily happenings at my house. (What a cutie she is! Her sweet little voice) Anyway, not knowing much about her meds/diagnosis ect. What we have found that is making some difference is: First thing in the morning I give her prevacid and water, while I'm waiting for the 1/2 hour before feeding, I give her a breathing treatment (xopenex) to loosen and help cough out anything not in her tummy! We have doubled the amount of water we were giving her in a day and it has seemed to significantly cut down on the phlegm/vomiting. If you're anything like me, initially it was tough to increase the water because you don't want to waste the possibility of getting calories in her in it's place. But she is also digesting things faster and able to take more in. I hope that you can find something of help in that!
Good luck, amber

The Walsh's said...

I know I sound like a broken record but the Domperidone has reduced Lincoln's 2-4 times per day vomit to absolutely nothing. His pukes would be EXACTLY like Kaitlyn's. Please let me know if I can help in getting you some. I will ship whatever I can...

Abby said...

I feel your pain. Jared is turning 5 shortly and just this past year the vomiting has subsided to only when he is sick or very active after a feed. That said..I wish I had a magic answer. With Jared, it was just time. No meds seemed to really do the trick (although the vomiting did subside after we stopped the reglan. I think it was coincidental) Have you tried AM meds such as nasonex? I would also ditto AM water. Jared is very mucousy in the AM still. We are getting his tonsils out shortly and Im hoping this reduces it. Again, I wish I had the magic potion...I think it just unfortunately may be time. The fact she is 100% orally fed is AMAZING so kudos to you and her for that feat. Jared is still 80% tube fed and I fear we waited too long to push the oral feeds to this level. Its great she is only 2 and doing so well. Also, congrats on reaching a wonderful milestone (yet bittersweet) in your pregnancy. I remember with my younger son reaching 28wks (Jared's birth, Zachary's passing away) and feeling a huge sense of relief.
~Abby (mom to Jared, former 28wk surviving twin from PPROM, gtube fed!)and my other miracle son Jeremy, almost 3 (35wks, totally healthy!)

Anonymous said...

The differences you describe about K vs. other kids might be sensory. What made a huge difference for us is when our kid started preschool.

I ignored the developmental ped's advice and put the kid in for 4x a week at 4.5 hours a day. It worked wonders! Socialization and the ability to sit still are now totally normal, though the kid is still on the sensitive side (nothing anyone would notice, though).

Put K in a toddler program now- the pre-preschool. It will change a LOT.

hallegracesmama said...

I know I've said it before, but that is EXACTLY how Halle was until recently. I think the solution for her was a combo of things. The biggest was the type and volume of food we gave her. Anything liquid-y has to come in moderation. I had always pushed the high calorie yogurts and drinks, since she could only hold so much, but finally realized that they were a part of the problem. Also, it took a long time for us to recognize Halle's cues for "all done." She could talk and tell us, but she didn't. We had to read her body language and just stop when we could tell she was done...even if it meant not getting the calories in. We fed her in front of the TV for so long b/c it kept her attention off the feeding and we could get more in her...and we probably pushed too much volume in.

We never did solve the phlegm issue, and it is still a problem sometimes.

Anonymous said...

Hi there! I've been reading your blog for a while, and I am so happy to see how well Kaitlyn is doing overall. What a cutiepie! The reason I feel the need to write now is that I could have written this post myself! And today I was desperate for help(i.e, having a meltdown). Everything about it sounds just like my son(former 25-weeker) who is now two. He has the mucous- induced puking,bad breath, refusing food--just like Kaitlyn.

It seems to come and go, and I'm never quite sure what brought it on. His doctors have never been able to give us a reason for this. I should add that even when we have "good days", it is pitiful what he is able to take in.

Anyway, I have wondered if the mucous/puking/bad breath are caused by partial intestinal blockage. I'm not sure, but it seems like my son has the most trouble when he isn't pooping enough. Once the problem is set in motion, it takes at least 5 days to get somewhat back to "normal". I wonder if anyone else has theories on this?

Thank you so much for sharing Kaitlyn's story. You have been a great support for me. Only another person who is experiencing feeding disorders in their child can really understand how hard it is to bear. I pray that God will heal our little pukers and bless them with good health!
Christina

Cristi said...

I just have never heard of this problem before until I found your blog. Bless your heart and Kaitlyns. There has to be an answer somewhere and I am making it a matter of prayer for you and your little girl. Somehow some way relief will come. That is my prayer. God Bless You.

Trisha said...

I don't have advice about the phlem/vomiting, but it's SO great to see Kaitlyn drinking from a cup! (and eating from a spoon!!)Way to go Kaitlyn! She's come a long way Liz, and you should be very proud of yourself for helping her get to where she is!
It's amazing (and sad) to me how our kids just get used to vomiting. Caleb is the same way...vomits and then continues eating as if nothing happened.
Congrats on 26 weeks! You guys continue to be in my prayers.

Anonymous said...

I've read your blog from time to time and was wondering, you mention that your daughter has sensory issues. This is a stretch but could her excessive vomiting be related to that? Meaning, could her body be overly stimulated to receiving food and freak out and resort to vomiting. I'm by no means educated in this field, just wanted to offer a perspective, and I'm sorry that I can't offer a solution.

Anonymous said...

First, let me say that I have no first hand experience with this vomiting problem, but after watching the video, I just wonder if you've tried feeding her less at one time? What would happen if you fed her just a few bites, say every half hour? It seemed that she vomited quite a lot! Maybe her stomach just reaches a point where it can't hold any more, and then gets rid of everything ...

Anonymous said...

has Kaitlyn had an EGD and UGI done before. If not, I would request one, maybe that will give you some answers.

Jon and Holly said...

First off, let me me say thanks for blogging about your daughter. I first discovered you through a video on YouTube. Seeing you chasing Kaitlyn around trying to feed her through the tube was quite refreshing. It's nice to know that we're not the only ones who lead this sometimes bizarre life :-)

Our daughter Emmy (Who'll be 3 in August is currently 100% G-tube fed and has been since around 1) has had similar issues with phlegm, especially in the morning. We have found that giving her 2.5ml of Cyproheptadine in the morning and at bed time has helped a lot in keeping the phlegm, and therefore the vomiting, under control. Here's a link with more info: http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a682541.html

Thanks again for sharing and good luck!

skeybunny said...

Liz,

A few thoughts on the vomiting:

If the vomiting is truly due to reflux, there is a surgical option: a nissen fundoplication. My son had this done at age 4 weeks, and without it I truly believe he would not be here today. It is extreme and I don't know that K would be a candidate (Evan was dropping below his birth weight, was at high risk for aspiration pneumonia, and had major swallowing issues). It also means that you have to keep the tube for venting purposes. Evan does not vomit (ever), and he is a pretty gaggy, phlegmy kid. Having said that, not everyone's experience is as positive as ours is (it can loosen over time and allow vomiting). A nissen does have risks, and we had to weigh them carefully against the benefit. But in Evan's case, I believe it was the best option for him.

If the vomiting is behavioral or sensory... I know you have already been through one round of feeding therapy (and your insurance is not likely to pay for it again). There is a feeding therapist in Everett Washington named Carol Lorioux Loup. Her clinic is called Toft House. I met her at the Blendarized Diet workshop that Lesley Marino (of the BD listserve fame) came to last June. I know she works with kids like K. The family goes and lives at her clinic for a 2 week intensive therapy program. At the workshop, I met a 3 year old who had vomiting issues similar to K's. It was about 6 months after his therapy, and I watched him eat french toast pieces with no fighting and no vomiting.

Sarah

Jon and Holly said...

Liz,

My husband posted a comment re: vomiting issue and I wanted to add to it. First of all, our daughter Emmy also is a vomiter. However, within the past few months it's decreased significantly. Maybe this was caused by the cyproheptadine, maybe not. Also, I have cried many tears after a successful feeding (by feeding tube) would be quickly projectile vomited across the room. That said, I seriously considered a Nissen fundoplication. Have you? What stopped me was the idea of not being able to throw up even if you have the flu. However, if Emmy ever becomes successful with oral feeds and still vomited, I'd revisit the possibility. I just can't imagine all the effort you and Kaitlin have put into successful oral feeds only to have it come out the wrong end.

My thoughts are with you. And thanks for your blog. I have related so much to it and have been left feeling less isolated as a result.

Shannon and Carey said...

Dear Liz,
Please accept this note as a gentle reminder that we are all here with you even though we may not live remotely near you. You have our support and we hear you and your frustations. I am not with Kailtyn everyday so it was easy for me to see the sweet little girl who has this awesome tiny voice and not see the vomit that you all have to endure. I have no suggestions about the feeding issues. I am sorry. I wished I lived close to you and knew you so I could help out in some way (respite-wise).
We live in a 2 bedroom house, have one income and my husbands parents help us every month so I can stay home. (How humbling to take a check from your in-laws every month!) I have been having a rough time too (and Im not comparing it to your rough at all) and feel down and trapped. Trapped because I dont want to use gas, spend money anywhere. This is the part of your frustration I can understand completely. Know that I, too, am going through this with you. I hear you.
-Shannon in "expensive" Austin
We moms are all in this together!

Catherine Chandler said...

Hey Liz,

When I saw this post, I actually took a few days before reading it fully. I am Jon & Holly's nanny (from above comments), and have been with them since E was about 4 months old. It is such a relief to be able to see other families going through this (though wouldn't we all rather that no one had to?), and to see their childrens' progress. I think we all feel our hearts sink when the little ones throw up, and I can't imagine the frustration after having done an oral feed. With the tube, there's disappointment, but then you know in 30 minutes you can just try again. I tend to go very very slow with the feeding for "fear of the vomit". E has actually been doing better unless she is a. too active after feeding, b. sick, or c. laughs too much after feeding. I so wish I could give you a magic answer, but I definitely think there are a few paths. 1. more water (I don't know her intake, so this may or may not be necessary), 2. medical exploration (trying something new/elimation), and 3. not necessarily related to vomiting, but more to socialization. E is now in daycare and has been doing well--I see her mimicking her brother more, even with eating. She ate two little bites of my apple the other day! Which is a miracle because apples are wet and she hates wet food, and she ate and swallowed both bites. I hope you find something that will help. E always gets vomity when she's phlegmy.

And also, I am so happy to hear that your pregnancy is going well, with the exception of the placenta previa. I am sending you all positive energy and hugs from up north.

Kristin said...

Hey Liz,

Congrats on the 26 weeks! YEEHAW! :-)

After reading the post, reading the comments two things came to mind..

One was dietary elimination -- phlegm buildup can be caused by an allergy and the first that comes to mind is dairy - perhaps adding some lactaid to milk, cutting down on yoghurts and cheeses etc - as a test. Lactaid can be expensive, but might be worth a shot.

The second was other allergies causing post nasal drip and the phlegm buildup? I suffered hideously from PND as a teenager and adenoids were removed and the world was much better.

I also second the comment about trying a few tablespoons every 30 mins or so. I had some challenges with Miss P when we were on vacation and her not wanting to eat, and so I would just leave her food on the plate, take the plate with us everywhere and she'd take a couple of bites every 15-20 mins and then go do whatever and then come back - I knew she was getting calories, and she was certainly happy with her bottle - but she also ate at her pace and how her body let her. If I pestered her to eat, she just flatly refused and I ended up frustrated. I figured hey, you want cold french fries/grilled cheese/scrambled eggs, you go right ahead and eat them.

I _know_ that it doesn't make for an easy sched for you if she's 'grazing' all day, but, if it makes it easier..

Just my 30 cents (inflation!) worth.
Lots of hugs and belly rubs for that growing baby :-)

K&P

Stacy said...

Liz -

Tanner was a vomitter (not nearly as often as Kaitlyn, though!). His started prior to his transplant - and was due mostly to his large tummy. It did cause him to have minor oral aversions (as an infant) - and he would gag at almost anything with texture for a long time.

For several years after he got better, he could gag and puke at will. If he coughed, he vomitted. If we fed him something he didn't like, he'd throw up (he can still do that if we aren't careful). I know this isn't entirely reassuring, but it slowly got better. I think alot of it is a learned reflex on their body - the phlegmy cough has uses the same muscles / motions as vomitting. Maybe that is what is causing it?

Many prayers and hugs for you - this is the last thing any pregnant woman should have to deal with!

Jennifer said...

Hi :)
I'm a follower of your blog and I felt as though I needed to respond about some of Kaitlyn's issues. My son was very phlegmy, but he was allergic to soy and dairy. With soy he would get eczema and dairy hives. I also noticed that with dairy and soy he gets extremely phlegmy. While I know she was tested and it came back negative, are you able to eliminate dairy from her diet to give it a try?

Also as for the adenoids. My son needed his removed. He didn't need any scoping, just an x-ray to see if they were enlarged and if his airway was blocked. And the adenoids produce more mucous even if an allergy isn't present. However, dairy does produce more mucous no matter what. Even if there isn't an allergy. So, if you are able to, eliminating dairy could be beneficial. I don't know how necessary dairy is to her diet otherwise, though. So, this could be useless advice lol! Also, does Kaitlyn tend her have to mouth open a lot and when she sleeps, does she keep her head forced back as if to be trying to open her airway? Is she a noisy breather and tends to snore? Those are possible signs of enlarged adenoids, too.

After my son had his adenoids removed he had less mucous production and when he does get sick, it's not as bad as far as the thick mucous goes.

Another thought I had, if you can possibly get it in her, Mucinex is REALLY awesome at getting the mucous thinned out. It has helped Logan soooo much in that department as well.

Anyway, I don't know if I've helped at all, but thought I would give it a try. Congrats on your pregnancy and hope that it continues to go smoothly for you! :)

Jennifer

Anonymous said...

Hi Liz! Mandie from South Africa here. Just a few thoughts regarding the phlegm. Can't it be that something in your inviroment is causing (or contributing to) K's phlegm? I'm thinking dust, pollen, air pollution, animal hair and so on. Maybe a long term anti-histamine treatment will work.

Congrats on your pregnancy from me as well!

Regards
Mandie

Sarah said...

We started Mila on domperidone ( Motilium ) this week. Over the last month, Mila had an UGI that showed no movement into the stomach, and later had a gastric emptying scan that was ** perfectly normal **. The GI's idea was that it was transient delayed gastric emptying. She's been on it for a few days and we've not had a vomit since then. We've noticed a bit of increase in eating as well. ( A few ounces. ) I'm not sure its enough to keep Mila from getting the gtube next month though.

If Kaitlyn hasn't had a GES recently, I'd highly suggest one. Or two.

Also, I know you said she hasn't been scoped. I would suggest she be tested for Eosinphilic Esophagitus, the spelling of which I've mangled.

Has she had a video flouroscopy done? Modified barium swallow? I wonder if she has some sort of esophegeal stricture that might make her a bit likely to gag / puke because the food is stuck. Also, if she's got a seriously uncoordinated swallow or slow esophegeal movement, it could explain why she starts sounding junky and then pukes ( Food residue builds up, she tries to clear it, chokes and vomits it all up )

I second ( third? ) the notion of some breathing treatments before eating. Its super dry here in Edmonton, and Mila is extremely junky in the morning. After her morning meds ( all 7 of them!! ), I often encourage her to drink some water or sit in the steamy shower with me. Her cough is more productive then, and often we can get away with a mucuous vomit instead of letsthrowuptheentirecontentsofournightfeeds!

I hear you though, Liz... I really really feel for you. i can't tell you how helpful your blog has been. WAy before M was born, I offered to donate breastmilk. I had no idea what we were in store for, and I don't think I could have done the four months with NG tube, huge amounts of vomit, and a gtube looming in our future ( 5 weeks ) without the support from you.

May I urge you to join one of the best resources I've found? Parent-2-parent.com/forum

Tube feeding issues! Motility issues! CP! Anything you can think of and all the parents understand. Every last one!

Anonymous said...

I was also thinking of breathing treatments, sitting the bathroom while you take a hot shower idea.

Also, what about Mucinex?

Anonymous said...

Just a suggestion.. singulair, typically it is for asthma/allergies, but several of our specialists have commented that they have seen a reduction in reflux as an added perk. We, too, saw, a big reduction in puking when our son, 26 weeker, started taking it over a year ago.

Anonymous said...

Preemie John's Mom Says Elimante Milk and try RIce Milk

Anonymous said...

Hi,

My daughter has GERD. The vomiting in the video doesn't really look like GERD vomiting. That seems to be more like projectile vomiting.

But I have a couple of questions. Have the doctors done an EGD or a colonoscopy with multiple deep biopsies? I wonder if this could be eosinophilic esophagitis or an eosinophilic disease somewhere else in the gut. Symptoms are often confused with GERD. If you're not symptom free (or pretty close) on twice daily dosing of a PPI you should consider eosinophilia.

http://www.emedicine.com/MED/topic688.htm
http://www.uclahealth.org/body.cfm?xyzpdqabc=0&id=502&action=detail&ref=379

The other thing I'd wonder about is Cyclical Vomiting Syndrome (CVS). Is there family history of migraine?

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/index.htm

Laura

Parenting in the NICU and Beyond said...

My daughter did have a nissan and while she doesn't vomit, without meds she would constantly cough, gag and then choke. She is gtube fed through a pump.

The only suggestion I have is to possibly try the antibiotic eythromacin. It works similiarly to Reglan. Our daughter was getting increased dosages of Reglan and it wasn't doing anything. When we switched to the eythromacin her coughing, gagging and choking have gone down tremendously. It doesn't work on all kids but might be worth a shot.

Take care!

Kellars Mommy said...

I have no advice on the vomiting, but reading through some of your responses I'd say you have plenty of stuff to keep in mind, some of the stuff I never would have thought of..I wanted to say that I do however know the feeling of "not being on the same level as other 2 year olds" this honestly hit me like a brick a few months ago when I started letting Kellar go and play around other kiddos, wow the difference is there and there's no hiding it here, at times I sit and watch them and just want to cry, then when they RUN up to their mom, go find their shoes, their sippy cups and I sometimes feel green with envy b/c it's just another day for them, there's no 2nd thought as to what their little one is or isn't doing, that they don't understand that here I sit and all these differences are running through my head..Sorry!!! I hope you find a solution to Miss Kaitlyns vomiting, she is such a cutie!!!

The Walsh's said...

Domperidone showed potential risk with intravenous use at a very high dose. From what I've read, the risk was similar to that of reglan (dystonic reactions). There have never been ANY studies with the oral use of Domperidone. The US acted quickly because of the IV issues and have never revisited the issue. Canada, on the other hand, has done extensive research and deems it completely safe. In fact, the Drs. here LOVE the drug.

For her weight, she should be receiving a max of 20 mg daily (in 4 doses). The compounded version comes in 120 ml mixtures, so it would 1 ml 4 times daily.

Hope this helps!! Let me know if I can do anything...

Anonymous said...

I posted an earlier comment here questioning whether conctipation could be a cause, which as it turns out, it's not. But I wanted to add something. My son has been diagnosed with eosinophilic esophagitis and is allergic to ALL types of milk. This is diagnosed by biopsy of the esophagus(or gut if problem is suspected there).

My son is on Elecare amino acid based formula, and has been "re-scoped" to check whether the EE is under control. At that time it was determined that his EE had been resolved, however(and this sucks) --he continues to puke and refuse food. Our GI believes that he has multiple issues contributing to his feeding problems because what he usually sees is a complete resolution of feeding problems when the EE is under control. Our son did, however, puke MUCH more when his EE was flaring up.

This is a fairly complicated disease, and it can be difficult to determine what the allergen is because the reaction is not mediated in the same way as "normal" allergic reactions. A negative allergy test does not mean that a food or airborn allergen can be eliminated as suspect.

All that being said, I would talk to my dr. about EE, because it needs to be resolved and controlled if K. has it, but I would suspect that there will still be the underlying problems of prematurity.

Sorry for the long post. Good luck in finding some answers!
Christina

Anonymous said...

My daughter sounds VERY similar to yours. I don't have a great answer how to decrease her phlegm, but here's what I've done to decrease my daughter's vomiting. (This seems very simple, but it took her feeding Dr to suggest it to me.) I noticed she becomes more mucousy towards the last 1/2-1/3 of her morning feeding. So I cut her morning feeding in half and feed the rest of it to her mid-morning (to put it another way, I've just switched her morning snack with breakfast). Her vomiting has decreased dramatically; when I increase the amount, usually to see if she can tolerate more, she usually vomits. Morning is usually the worse time (most mucousy) for my daughter.

Also, she has less phlegm when she's on Periactin.

Good Luck!

Anonymous said...

All people react to allergy medications differently. For some people, Claritin does nothing and they use Allegra or Zyrtec, etc. Just because the Claritin didn't work, doesn't mean the problem isn't allergy related, it may just mean she needs a different or stronger antihistamine. The Periactin may be working because it increases appetite, but what most people don't know is that Zantac has antihistamine properties as well. The combination of the two might just be what she needs to resolve some of the phlegm. Also, dairy creates mucus. Even if there is no allergy and you are in perfect health, dairy can create mucus/phlegm.

Anonymous said...

Has the doctor ruled out Cystic Fibrosis? I know that causes lots of phlegm. Best wishes and I'll keep ya'll in my prayers.
Tammy

Anonymous said...

I wrote a really long response a couple of days ago, but it didn't post for some reason. We had terrible, terrible vomiting due to reflux and phlegm. The plegm vomiting continued even after our Nissen (which I was kind of relieved that she could vomit sometimes when she was sick, although not so pleased that she still vomited so much).

But anyway, Sarah takes Zyrtec every night and Nasonex every night. These really reduce the amount of mucous and phlegm. She is four now and no longer vomits on a daily basis, but whenever she gets sick, the phlegm vomiting starts again. She has also had aspiration-related pnuemonia twice (probably also related to her paralyzed vocal cord). Double-check to be sure you can take the Zyrtec with the Periactin, but it might be worth a try, even if Claritin didn't help. And Nasonex has been a huge help for us. Sarah had serial sinus infections before she started taking it, which went into pnuemonia more than once.

Shellie (Sarah and Rebecca's Mommy)

Anonymous said...

Hi Liz: One thing I don't recall you mentioning with regard to Kaitlyn's medical care is homeopath/naturopath medical treatment. Would you consider it? It seems to be the direction so many people head to when western medicine proves to be ineffective for them. I have some local names/resources; if you're interested, let me know.

Thinking of you, Maria K.

Anonymous said...

Hi,

The vomiting video strongly reminds me of my daughter when younger. She had really bad lungs and would vomit several times a day. It always got worse when having a cold.
What did help some (except for medication) was having her jump on our bed in the morning to help clear the phlegm. Jump for several minutes. Then she would cough and "vomit", but only the mucus would come out, not the food (because she jumped before breakfast).
Hang in there, the food/vomiting problem is so tough, my thoughts are with you.

Hannas mom

Anonymous said...

Ok, heres something that you could try. I have GERD myself and it is so severe that I am always coughing up the this phlegmey stuff. But you say that K's phlegm isn't from GERD. How about a combo of both GERD Phlegm and allergy phlegm? I take Prilosec 2x a day along with Zantac since they are 2 different things. And then instead of Claritin, how about Zyrtec? It works amazingly for my kids. Antihystimes take 2 full weeks to get into their system completely.

GOOD LUCK!! Maybe you can get this in cotrol by the time the baby gets here!

Stephanie

Anonymous said...

Hi Liz. This is my third response to this post! Sorry to be a pest. I just wanted to mention that I spoke with my son's ped. today, and he feels that it is unlikeley that the phlegm is coming from the nose since in our case there is no runny nose, noisy breathing, or coughing. He suspects that it is GERD related and explained that the GI tract produces mucous in response to irritation. Anyway, he recommended mylanta (.5 tsp) three times a day to help sooth the esophagus. This is in addition to the prevacid. I just wanted to share what info I could in case it is of some help to you and Kaitlyn.
Christina

Shari Hall said...

My son has never had a G-tube but I have been told by several different feeding therapists, as well as my son's doctor that G-tubes can cause excess mucus production around the site of the tube. I had one feeding therapist tell me that he had had quite a few G-tube kids with pghlem/vomitting problems until they actually had the tube removed. I dont know if this is related to Kaitlyn's pghelm or not but just thought I would mention it. I understand your pain! I live it daily as well!

Anonymous said...

Mucinex thins phlegm. Zofran prevents vomiting.

Anonymous said...

I feel really bad that you are going through this. I suffer from
EE and my child would throw up when she was a child. She did grow out of this.I recently had blood drawn ( new way to test for allegies)and found out I am allegic to numerous foods with the biggest being milk. I would suggest that you test yourself first to see what you might be allergic to, that you past on to your daughter. Then remove that from your daughters diet. The best would to have your daughter's blood be drawn but that's up to you. I have found that benadryl daily helps me with the foods I eat and also I am trying to limit the foods I am allergic to.
I hope this helps.

April said...

Hi. I had Delayed Interval Delievery of twins...I delievered them 7 days apartat 26 weeks and the second at 27 weeks. My 26 weeker is an extreme vomitter. He started Reglan, Zantac and Singulair in the NICU after being diagnosed with reflux. After much begging and pleading we got a pH probe, only to be told it was reflux and he was changed to Prevacid, and I can see no change. He vomits about 4 times per day...I call it projectile vomit because it gushes...he sometimes makes a dry-heeving noise and if we're lucky we can make it to a sink or garbage can, but hardly ever. He doesn't even cry anymore...and he's instantly hungry again. He'll vomit, we get him cleaned up, etc. and we start all over with a new bottle. My heart goes out to you and your family.

Anonymous said...

Have just posted the following message on the Bliss (UK prem babies site):

Hi, am really struggling with Matthew's reflux at the moment. He went on to Ranitidine and Domperidone last November and by christmas it was like having a different baby, absolutely wonderful. But over the last 4 weeks it is back with a vengeance and he is now throwing up after nearly every feed. He lost 2oz last month (is already on the 0.4th centile).

I have to give him a constant stream of toys to play with to distract him to get the spoon in. We are still on very smooth purees (he is 18 months old this month) as he gags incredibly easily on lumps. He will pick at finger foods but then after a few successful swallows one will stick and it all comes back up. He also chokes very easily on his water. A lot of the time I think he leaves his highchair with an empty stomach even though I keep offering food, even after he vomits (I clean him up first!).

We started growth hormone last month but I can't get any protein into him so it can't do it's job. Tonight he heaved until all his chicken puree came up (about 6 spoonfuls) then accepted a third of a pot of fruit puree. I gave him a baby biscuit while he watched Night Garden and he gagged on a bit and threw everything up again.

He now occasionally gags and vomits when I put his bib on and this has really scared me, especially as his consultant said today it could now be a learned reflex. He also gags if I try to offer more food or drink when he has a mouthful already (but takes ages to swallow). Also vomits every time he is put in his car seat, we are late for everything :( Finally also hates having his teeth cleaned, not good when he throws up so often.
Basically, I think I have allowed this to become an issue and am now so stressed at every mealtime that he picks up on it and refuses food... and round we go. I am getting very weepy about this now as it is really affecting my relationship with him. I know I'm not to blame for the original reflux but I'm definitely making a bad situation worse. Every day I say I will do better but I can't seem to break the feeling of it being a battle and end up in tears. I feel completely incompetent and am scared he will end up having an op if we carry on like this.

I just wanted to thank you so much for your post. All these experiences mirror my own. Our boy Matthew was born at 28+3 and was ventilated for 90 days. He is still on o2 for 7 hours overnight. So, we don't know if it's a phlegm problem or oral hypersensitivity but just knowing I'm not alone or going mad is very reassuring! Thanks so much.

Anonymous said...

I feel for you and your family. My son is a 30 week preemie that was diagnosed with spastic quadriplegic cerebral palsy on his first birthday. Our pediatrician never warned us about the possibility of the diagnosis prior, just kept saying that he would catch up. Then the pediatrician doctor decided that my son who on his first birthday weighing in at 17 lbs and had followed the growth curve at the third percentile needed a GI doctor. He had always been sort of spit-uppy, but never like he is now. That doctor decided that our son needed to be on a diet of only pedisure and to stop all oral feedings. Mind you that there were no issues with his taking bottles, or eating though he did have slight delay in swallowing. Once we weaned him to all pedisure, our son projectile vomited EVERY feeding. We took him off the Baclofen (for his CP)he was on per request of the GI doctor and put him on Reglan. After almost 2 weeks on Reglan our son was still vomiting.

We changed to another GI doctor that the pediatrician recommended. That doctor decided to try a NG tube and as a temporary fix and we tried that for 4 months, still vomiting. We even went to night feeds so that we can add more volume as volume is now an issue. About 4 hours into the night feeding our son starts throwing up the feeding. After a year of our son vomiting this doctor had only the answer that our son needed a Gtube. We explained that he still had no issues getting the food to the stomach, just it leaving...

On to the next GI doctor who decided that the Nissen and pyloralplasty would be the answer with a G-tube placement. We thought for sure that would be the answer, the food is just not leaving the stomach fast enough and with our sons CP it made sense. Volume being the issue, the nutritionist is kind enough to use duo-cal and canola oil to makeup the calories. (Previous nutritionist pushed volume only) Three weeks after the surgery, the Nissen blew (we were told that this never happens). The new GI doctor blamed the surgeon the surgeon said that it was a neurological issue so we had a night in the epilepsy center. No seizure activity is causing the vomiting. Next we try the G-j tube and even that didn't work with a check for eosinophilic disorder and our doctor tells us that our son is at the high end of normal for this and that we should try Gastrocrom and feed with Neocate. We did this for a month, our son lost weight and didn't stop throwing up. We even tried special formulas that were made for children with CP, they didn't work. We did however figure out the night feeding, for some reason goes better with a shorter period of time feeding instead of all night.

On to the next GI doctor who specializes on eosinophilic disorders, they look at the slide and say that they barely see ANY eosinophils in the slides taken from previous GI doctor. This doctor at least searched different avenues of why our son may be vomiting. We did an endoscope and colonoscopy all came back normal. We did learn that the pyloral plasty which was done was insufficient. We also did a kidney scan, ultrasound on the kidneys, pancreas, bladder and an MRI. The left kidney was larger than the right, but was told that this is sometimes normal. We are currently trying Zofran, that doesn't work. Volume is still a major issue which we were told to give 37 ounces we told them it was impossible but we would try. Night feedings went back to the way they were when we were using the NG tube, he vomits. Volume is still an issue and we have now gone back to duo-cal and water to substitute for the liquid intake. The next step may be Botox for the pylorus. We have been told by our son’s physiatrist and neurologist that it is not just a CP thing that some of the previous doctors chalked it up to be after their ways didn’t work and after they all quit trying for answers.

I completely feel for you. I wish I had an answer for you also. It truly is a debilitating problem. How can one take a child out anywhere who can throw up at any given moment ? I am envious that your little girl can eat, we struggle with our son eating even a few bites. Our goal is that someday my son will get to enjoy his birthday cake; very child should be able to do that. It’s nice to know that we are not the only case in the country that is having this issue. I truly hope that it may just end up just being a time issue and that our son will with age grow out of it. Best of luck to you and your family.
I feel for you and your family and pray for answers for all.

Anonymous said...

I was so relieved to "stumble" accross your blog this afternoon. My son (a twin) is almost 1 year old and seems to vomit daily. He goes through episodes where they wont vomit for a week or two and then goes back into a cycle of vomiting after bottles and meals. His twin sister is perfectly fine and does not have any issues. My son loves to eat and we can not normally feed him enough. It is after he eats or drinks his bottle that he will start to caugh and up comes the phlem. He starts to choke and gag on the phlem and then the projectile starts. The Dr. does not really believe me that he throws up as much as he does. He is in the 20th percentile for weight, but still gains a steady amount. I think this is becuase when does does go through his episodes I give him another bottle/meal right after he vomits. He seems to be able to keep a "second serving" down right after he does vomit. We have tried a few different medicines and nothing seems to help.

He was hospitalized over Christmas with an IV for 4 days and they diagnosed him with gasteroenteritis (the stomach flu). We all know now that was not the case. As with your DD, we know that it is the phlem that is causing the vomiting, but we do not know what is causing the phlem. The Dr. can not say he has alergies as he is "not old enough" to have alergies. We did put him on Triamedic (without the dr's approval) and that seems to help a little bit with the phlem and keeps the vomiting to a minimum.

All the posts above have given he hope (and ideas) that he will grow out of this or at least we can try a few other medicines to help stop it. Thank you to all for taking your time to write down your thoughts and my prayes are with each and everyone of you.

Anonymous said...

My daughter too was a preemie and had huge vomiting/mucus issues. Have you tried some Benedryl?? Even though my daughter never showed signs of allergies benedryl has a drying effect and seemed to help control the mucus some. If your daughter is like ours--once mucus is in the stomache that is what makes her vomit. Our daughter too primarily vomited in the mornings too. Lots of times I would empty her stomache of the mucus via g-tube and then feed and she did better. If you can, try benedryl for awhile--it make take a week or more to get it under control and may make her sleepy but it did help us some!! Hope this helps!

Stephanie R. said...
This comment has been removed by a blog administrator.
Keelytm said...

This sounds really frustrating! I am glad things are going better though. I thought I had it rough getting my kids to use the hand wash timer after they go to the bathroom! Now I see that I don't. But I wanted to let you know that I have a friend who was experiencing something similar to your daughter's condition, though it didn't start until she was 18 or 19. Even water would be her throw up. It took a couple years, but eventually she went to a homeopathic doctor who had her change her diet and that helped. It turns out she was "sensitive" to most foods. Not allergic, so it didn't show up on the tests. But sensitive. And they were actually able to put a name to the condition. I wished I remembered what it was, for you!