http://lizmccarthy.blogspot
(I think the link will take you to the bottom of the comments. Please scroll all the way up to read her post).
Here is some additional information, from Liz, about her daughter.
Hi Stacy,
Thank you for your reaching out, after yet another day of pghelmy vomit, I
am about ready to throw my hands up and give up (yeah right, how can I give
up).
To answer your questions and more too, (as others have asked me too via
comments on my blog): (I think I'm going to put this in my blog too)
-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
-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.
- had 2 ear infections this year and 2 last year, minor ones.
-she is a very good pooper, never been constipated, EVER.
-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.
-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 was RAS allergy tested, 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 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.
OK, I just posted all the above on my blog too!
Thank you my dear!
Liz
17 comments:
I have been following her website for a little while now. I have never heard of such a serious vomiting issue before finding her site. The things we learn when a preemie comes into our lives. She is in my prayers.
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
I'd really reconsider the NIssen idea if there is confirmed GERD. The vomiting can, in itself, severely damage the lungs.
I wonder about eosinophila or cyclical vomiting syndrome. You don't have to have any signs of allergy to have eosinophilic disease. There are a couple of yahoo email groups for those with eos. One is called ACED.
Laura
Oh my. What a little trooper her daughter is.
Regarding "my thought on Dom is that it is supposed to speed up processing time of food," if it is a motility issue, has eurythromiacin instead of Reglan been tried?
My son was on Reglan when he first came home. It made him an insomniac, and I didn't think it helped his reflux at all. We never tried eurythromiacin, but my son's OT says that she sees a lot of babies who use it and also are on probiotics. My son was recently on the antiobiotic Amoxicilan for a sinus infection (one of the symptoms of a lot of vomiting with a lot of mucous in it); it seemed like his motility increased with the Amoxicilan.
How long has her daughter been on acid blockers? I have heard that one of the problems with prolonged used of acid blockers is that it wipes out the "good" bacteria in the intestines. Our son has been on acid blockers since about 2 weeks before his due date. He is currently just over 1 year old. We tried taking him off of Prevacid at one point b/c he wasn't projectile vomiting, but w/o the Prevacid, he stopped eating. In the past month, we've introduced probiotics, which seem to be going well. Our hope is that the probiotics will help repopulate the guts' "good" bacteria. That said, I haven't been able to find many empirical studies that show that probiotics work (except those on the websites of the companies that make probiotics).
Regarding the goat milk, I wonder if 2 weeks is long enough to determine whether it works. When I eliminated dairy/soy from my diet b/c of my son's allergy, the doctors told me it would take over 2 weeks to get rid of the dairy from my system. Could it be the case that the dairy is still in child's system for 2 weeks as well, hiding any potential effects of switching up the diet? Just a thought.
Best wishes to Liz and her precious daughter.
We have just completed a 5 week cycle of sickness that included vommiting 3-4 times a day. The amount of mucous thrown-up was daunting and our ped told us that this was the primary cause of the vommiting. The baby (20 months) was put on antibiotics, taken off Benedryl (made his sleepy and agitated but did clear up his airways) and finally, finally we did nebulizer treatments with Albuterol. That finally did the trick for us and his mucous disappeared. One thing my pediatrician has told me numerous times: They really can't accurately identify allergies until a child is older. I had wanted to do some testing and he feels it's a waste of time and money. My last thought is: Do you have access to a different pediatrician who might have a few other ideas? Good luck on this. I know how hard it is to see your child go through this.
My guess is based on what is going on with us: FPIES (Food protein induced enterocolitis syndrome). This is a non-IgE mediated allergic syndrome that doesn't yield positives on RAST tests or the prick tests that allergists perform. The only testing that works, for the most part (though is a bit inconclusive in some instances, especially for dairy) is Patch testing. The specialist in this allergic form is Dr. Sicherer at Johns Hopkins and our allergist, Dr. Terri Brown at CHOP has also worked a lot on this. The testing is fairly new. POFAK (parents of food allergic kids) has great resources on their website on this---the site is at kidwithfoodallergies.org. The way FPIES (or MPIES--just to milk protein) works is that GI symptoms manifest themselves anywhere between an hour or two up to five or six hours post ingestion, tend to be violent (projectile) and repeated and that even a small trace amount of the allergen can bring them on. The way one has to figure things out is maddening and involves lots of food challenges. The worst offenders are cow milk, soy, wheat, barley, oat, egg, and poultry, but one can have FPIES to anything. Most (75 percent or so) kids outgrow this by age 3, but my bet is that my kid is not most kids and that none of our preemies are most kids, so who knows? Anyway, that's my hunch.
I've got a good puker at my house. I'd probably try the Dom too or try Reglan again. My son did well on erythro too but if you guys have C diff issues, don't do the eyrthro.
We've had to stop all milk drinking and pediasure because it really slows my sons tummy down. It says you've tried the hypoallergenic formula's. I'm assuming you've done neocate and elecare which are amino based (not hypoallergenic) if not I'd check those out too.
And stay away from the nissen if you can. Yes they'll still need to puke but instead will retch for hours, it's ugly. NIssen's were made to stop acid reflux, not puking.
If you guys do the solutab for prevacid it has lactose in it. NOt milk lactose, it's medical grade lactose but if there lactose intollerant it can make it worse.
Prilosec is very similar to prevacid, you may want to try nexium. For an H2 blocker, axid has been found to actually help the tummy empty a bit faster and tastes much better than zantac.
When/if she has a scope done I would check for EE and celiacs if you haven't all ready but it doesn't exactly sound like that is the issue. Just very good to rule out.
I'd too try and find something to help with the gunk. My son also has serious lung issues and when he gets gunky it becomes a huge puke fest at our house. Maybe some zyrtec?
I have a couple of different comments. First off, by watching her video, and seeing how much she vomits, I think you might benefit from trying much smaller, more frequent meals for a while.
If you feel there is an issue with motility, reglan and erithromycin are options to discuss with your doc before you go hunting down something else. My eldest was on a maxed out dose of reglan for almost a year, and it was the only thing that kept her growing with her severe reflux.
As far as milk allergy goes, according to our allergist, there are many reasons why a person could be allergic or have an intolerance to milk, and have all testing be negative. Our daughter had severe problems after getting a bovine HMF in the NICU, so we were told to avoid all milk products until she was two, even though her allergy testing was negative. They were supposed to admit her between the age of 2 and 3 for a food challenge, but she had an accidental exposure first (some other kids sippy cup) and did fine, so we were able to cautiously add milk back on our own.
If there is a milk protein allergy, goat milk is NOT a good alternative for most kids. In two studies I've seen quoted, more than half of milk protein allergic kids cross reacted to goat milk.
Also, milk protein allergy can cause ulcerations in the GI tract, which can take quite a while to heal. I've read it can take two weeks of an absolutely milk protein free diet to see a response. That means no trace whey or casein from anything. This is tough, I know because I was on a totally milk protein free diet for 2 mos while breastfeeding my son.
Lastly, you can look at tonsils and adenoids without a scope. Adenoids can be seen with an xray. My daughter had a CT because they wanted a good look at her sinuses too. Tonsils just require a quick look in her mouth with a flashlight. Our eldest was 2 when we noticed her huge tonsils, so because of her age, we had to do a sleep study before they would approve getting them removed. Her's was normal, so her enormous tonsils are still there to this day. She does choke on things like meat every once in a while, and think the tonsils are the reason (they are almost touching).
Hope this helps in some way.
-Kristie
I'm no pro at this, but I thought of two things (also mentioned by Kristy and Laura): enlarged tonsils and migraines.
As a kid, I was frequently diagnosed with strep, but my doctor was 'progressive' and refused to consider removing my tonsils... To this day, when they are enlarged, my gag reflex is "right there."
Also, now that my sister and I are older, we realize that there were many times when we had vomited that we were actually having migraines-- just didn't have the language to describe it at the time (I think when I was about 7 I started calling it my "rattly head").
Best wishes for solutions!
Also, regarding the phlegm she vomits-- isn't there a condition (not CP, but related to it) that causes excess mucus production?
I'd have to research... but I just thought I'd put down some thoughts.
Just another brief note: it definitely takes at least 2 weeks to clear milk from the system---that was our experience. And scoping for EE might not be a bad idea at all. I'd advise a good allergist working side by side with a good ENT and a good GI. Tall order---to get three specialists all on the same page, but since the body is a whole system, it makes sense to me to treat it as such.
Having Daniel's tonsils out has completely stopped him from gagging when eating. It also has helped with his draining. But I would imagine if she had enlarged tonsils, her pediatrician would have noticed. Has Cystic Fibrosis been ruled out? I know that causes lots of phlegm issues. Best of luck. She'll be in my prayers.
Tammy
Liz, you've gotten some really terrific suggestions: EE, CF, enlarged tonsils/adenoids, CVS, FPIES . . .
This is a wild guess: H.Pylori?
When I was treated for H. Pylori, my lactose intollerance improved tremendously. (Lactose intollerance is different from allergy--which is a sensitivity to milk protein. With Lactose intollerance, one is sensitive to the milk sugars. I hope I didn't insult anyone's intelligence . . . Most of your readers probably already know that factoid.)
Also, a lesion somewhere in her digestive tract might be producing mucous.
Did your daughter have RAD, reactive airway disease, in the NICU? Inflammation (with mucous production)and constriction of the airways are symptoms of RAD as well as of asthma. Even if you have not received the diagnosis of asthma, you may have received the diagnosis of RAD . . .
Can you trace the eczema to your daughter's feet and ankles to anything? Animal dander, mites, some cleaning agent you are using in your carpets that gets to be a fine powder when it dries? These things might also be in contact with her feet and ankles--that is why I settled upon them as suggestions . . . The cleaning agents--and I imagine you are using plenty of them with projectile vomiting--could also be getting aerosolized . . .
Is it possible that she is sensitive to one of the meds (or some inactive ingredient in the meds) that you are using to help her condition?
An infrequent allergen is the chlorine in pools . . . and there are plenty more infrequently-mentioned allergens out there. Are you keeping a diary of foods, chemicals, molds, mildew, insects, animals that you even THINK you can associate with an especially bad episode? The CHOCOLATE in milk? The artificial coloring in foods? Peanut particles? The exhaust fumes, if you live near a busy street or freeway? The glue under your carpeting? A perfume? A deodorant? A soap? A shampoo? A down pillow or comforter? The smoke from the barbecue grill?
Gas from a gas stove? Oil from an oil-burning furnace? Or some other equally unlikely fine particle in the air, that may also settle on the floor? (My daughter was sensitive to the tannin used in tanning leather, and certain shoes made her feet itch and break out . . .)
Chris and Vic
Thank you thank you everone, keep the suggestions coming! I just posted an update on my blog....
After reading about her daughter and watching the video I just have a couple idea that may or may not make any difference. I know in my youngest child when she has milk products she gets very full of mucous. When we vent her feeding tube or when she throws up it is very stringy. I have a couple other non-feeding tube children who are the same way and when milk is reduced or eliminated so is the amount of mucous. Just having excessive amounts of mucous can be a sign of milk allergy. To fully determine a milk allergy the individual (child or adult) would need to be off for at least 6 weeks before trialing again. This is because the milk protiens can take up to 6 weeks to full leave the body. With our oldest son we were told to make sure he was free from ALL forms of dairy for 2 months before trying agian then when when we reintoduced milk aftr 9 weeks the allergy was very clear. Howeve, before that we thought it was not a milk allergy.
Also has she had an upper GI, swallow study, or upper go and barium follow through to make sure that she is not aspirating even tiny amounts. I have a silent aspirator and she is on thickened fluids because because of this. She has rarely had pneumonia related to aspiration.
The other thought is does she have volume issues? An upper GI would be able to determine how large er stomach is and the max amount to give at a time to prevent vomiting. Our daughter vomited like her daughter does every feed until we learned that she has severe volume issues. If she eats more than 6 ounces in a setting then she will throw up past her nissen and continue to gag and wreth long after the vomiting has stopped.
Also how much water is she getting between her meals. For our youngest if she is not getting enough free water then she creates more mucous as well. Just 2 ounces of water about 30 minutes before meals can help boost thedigestive system.
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.
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A little boy in my sons school vomited everyday after every meal and it turned out the zyrtec he was taking for allergies was causing it.
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