Calling All Vomit Experts

I need everyone to head on over to Liz's blog and help her out. There is a video of her daughter vomiting during eating. The docs are out of ideas. I know it's a lot to ask, but if you have ideas and reach out to Liz, please also post it here. My site meter always has hits from people searching for help for their vomiting preemies.

http://lizmccarthy.blogspot.com/2008/05/please-help-solve-our-vomit-issues.html#links

(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

Those Years Are Gone

Under my post "Guilt Revisited"

Future of Hope wrote:

"Anyways.... My guilt hits me full force whenever I look back at my son's early years. All of the time spent focused on this milestone or that, pushing and prodding for just "one more" skill, all the time spent running from PT to OT to SLP and back again. I would give literally anything to go back in time and get off of that merry-go-round. We lost so much. So much fun, so much "bonding", so much discovering and play. All in search of what was "supposed to be" instead of "what is". If he hadn't spent so much time pushed beyond his limits, would his social/emotional outlook be better? I missed so much that can't be gotten back - so many "firsts" that came so late that they brought with them more anxiety than joy. I was so wrong. I want my baby back. NOT my "preemie", not my "special needs child" but my BABY. the one that I had in my arms, and that I dreamed away."

Not one day has gone by since I first read her comment, that I haven't thought about the emotional impact of her words.

I have often thought back to the beginning years of Paige's life. We had various therapies 4 days a week, for her first 2 years. Physical therapy (twice a week), occupational therapy, speech therapy. 4 days a week of people coming out to our house to tell us all of the milestones she was not reaching and how to help her reach them. After 2 years, the time spent in therapy lessened to 3 days a week and we then saw the therapists at a pediatric therapy facility. It continued this way (some months increasing the amount of visits) for the first 5 years of her life.

Despite all of this therapy Paige still sat up late, crawled late, walked late, talked very late, has tone issues, fine motor issues and has severe sensory issues.

Looking back, do I feel that therapy was beneficial? No.

It was not beneficial for Paige but it was beneficial for me. I felt that I was doing everything to help her. How can we turn away services that are supposed to help our child? After giving birth to a preemie, is any parent in the right emotional state to ask questions as to the efficacy of therapy? I know I sure wasn't!

I have met a few parents who did not put their child through therapy. I fully expected to see a child who had not progressed as far as Paige but this is not the case. All of the children that I have met, who did not have therapy, are exactly where Paige is at... tone issues, fine motor issues and sensory issues.

I've always been upset about how much Paige (along with her Dad and I) had been put through for 5 years, only to be exactly where she (most likely) would have been without therapy. But, until reading the comment left by Future of Hope, I never realized how much I lost.

I'm writing this post so we all can openly discuss the early intervention services. I want new preemie parents, who are desperately searching the internet for information, to know that they have a choice regarding therapy. I don't want to sound as if I am criticizing those in the therapy fields, there is a place for them. But, what I really want to know is how others viewed their therapy time.

Eczema or Ring Worm?

I noticed this round rash on Paige's arm tonight. It looks like both eczema and ring worm. Does anyone have any experience with this? I don't want to put steroids on it if it's ring worm because it will make it worse. Since Paige skin picks (due to her OCD), I surely don't want to make it more noticeable to her. But, I don't want to assume it's eczema and have it be ring worm, which is very contagious. I hate to keep her home from school since there is so much end of the year fun stuff going on.

So, any thoughts? Anyone?

A Zoo Day

Nope, not this zoo.

A few weeks ago we headed to our local zoo. I have to admit... although we have a membership, I'm really not sure if I like the concept of a zoo. The idea of animals being kept in captivity bothers me. But, the idea of using the zoo as a teaching tool has me coming back. My husband and Paige will gladly tell you how I go on and on, the entire time we are there, about animal rights. Honestly, it's amazing what they will put up with in order to go see the animals. hehe

The first time we went to this zoo (when we had moved here-3 years ago), and I walked into this exhibit, I cried. It just doesn't seem right.

Now, 3 years later, watching Paige and Tyler with the Orangutan, I cried all over again. It still doesn't seem right.



Paige's favorite animal has always been the giraffe.

This zoo has quite a few peacocks. Paige loves to get up close with Daddy while he is taking pictures. Notice how far away I am. There is something that most people (unless you have been with me outdoors) do not know about me. I am TERRIFIED of birds. I know it's silly and I've tried telling my brain how ridiculous it is acting. But whenever I see a bird (or a duck, peacock, bat) that lovely fight or flight switch gets flipped to flight. Maybe it has something to do with the fact that I was attacked by ducks when I was little.

Hubby, however, has absolutely zero fear. Apparently the peacock doesn't have any fear either. He did not use the zoom for this shot.


This peacock speaks "Paige". She asked it to open its feathers and it did. She got a huge kick out of it.


Tyler, on the other hand, could have cared less. Yikes! We've been busted. He just turned 2 and he still has his pacifier. Any one have any tips on how to get rid of it that doesn't involve tears (from me or Tyler)?

We were able to take it away while he was on the zoo playground but he ended up putting the wood chips in his mouth. I vote for the pacifier instead.

From dragon slayer....

to princess. She has the wave down pat.

So, what happens when you have a husband who missed his calling and should have been a photographer? (At his real job he designs high end home theater systems for installers, which he loves)


After a day at the zoo you end up with a memory stick full of flower pictures. (below are only a few)





I'm not complaining though. He gets the coolest shots.


It was such a beautiful day. We all had a great time, especially Paige.

So, why is she running away?


It was time to go to the gift shop! Shopping trumps everything in Paige's world! hehe

**********May 19th update*********
Tyler fell tonight, face first on the kitchen floor. Below is a picture of his boo boo. You can see the outline of the pacifier on his face. I was hoping that he would refuse his pacifier because it would hurt to suck on it but... no such luck. Side note... his hair looks that way because I took a cool washcloth to his face in hopes of holding down the swelling. When I looked at the pictures on the computer, his hair looked greasy. I promise, my kids are clean. hehe

Head in Sand

Ahhh, it's comfortable in here. The sand is nice and cool and it's dark.

There's a world out there? Really? Well, I think I'll just stay in here for a while.

You see, in here Paige isn't doubled over in pain after she eats.

Last year the doctor told us that her gall bladder did not contain gallstones so the pain must be in her head. And, doctors are always right. At least they are while I am in my home in the sand.

If I come out of the sand I will have to fight. Again.

I will have to scream. IT'S NOT IN HER HEAD. IT ONLY HAPPENS AFTER SHE EATS GREASY, OILY FOOD. HER GALLBLADDER COULD BE SLUGGISH AND SHE DOESN'T DESERVE TO BE IN PAIN.

What happens if they do listen to me? What painful test will she need? Is it worse than the pain after she eats. I can keep on trying to be careful of what she eats. Can I do that for the rest of her life? What happens if one day the pain doesn't go away after 30 minutes? Will she need surgery? I don't want her to have to endure another surgery? Which is worse? Pain after eating or surgery?

Thank goodness I don't have to come out of this sand and face this issue.

Can someone tell me how to turn off that little voice that keeps on whispering, "It's time to fight again. Get your head out of the sand"

Happy Mother's Day

May all of you have the peaceful day that you deserve so very much.

Thank you for being a part of my journey as a mother.

Canadian IVF Study

Helen posted this under the comments of another recent blog entry. I moved it to its own post so the comments can be kept separate and so the information would be easy to find for people searching.


Helen Harrison here, reporting from beachside at Waikiki where I just attended the 2008 Society for Pediatric research:

Here was an excellent study of IVF that bears on the discussion at hand:

[4305.1] The Cost of Irresponsibility

Bridget Spelke, Annie Janvier, Richard Brown, Danielle Vallerand, Keith J. Barrington. Pediatrics, McGill University, Montreal, QC, Canada; Obstetrics, McGill University, Montreal, QC, Canada.

BACKGROUND: Multiple births increase the risks of fetal, maternal and neonatal morbidities. The present epidemic of multiple births is partly due to assisted reproductive technologies (ART). In contrast to Canada and the US, many countries regulate ARTs. In these countries, single embryo transfer (SET) during IVF is the norm. However, mothers with a history of infertility have increased perinatal morbidity even when a single embryo is transferred. In previous studies, 10% of women who have IVF and SET deliver before 35 weeks (and are therefore admitted to NICU).

OBJECTIVE: To determine the impact of ART on resource utilization and outcomes in our NICU.

DESIGN/METHODS: We reviewed all multiple births admitted to the Royal Victoria Hospital NICU born between April 2005 and July 2007. Babies and mothers charts were reviewed. Using modeling and our patient demographics, we estimated how many days of complications could have been avoided if singletons were born to these mothers, had SET transfer been used during IVF.

RESULTS: During that period, 82 babies from ART multiple pregnancies were admitted to the NICU, representing 17% of NICU admissions.
4 mothers (9%) had previously experienced the death of a premature singleton.
42 mothers gave birth to 75 babies following IVF (15% of NICU admissions): average GA = 32.2wks, mortality 7%, intubation 34%, 60% TPN, 88% gavage, 6% BPD, 12% NEC / perforation.
If SET had been used in these women, and only10% would have delivered < 35 weeks, we could have avoided: 6 deaths, 5 severe IVHs, 270 eye exams, 4 surgeries for severe ROP, 260 intubated d, 643 oxygen d, 950 TPN d, 2001 gavage d, and 3082 NICU days.

CONCLUSIONS: Although some multiple births occur spontaneously, the current enormous increase in multiples is human-made, the lack of legal or voluntary restrictions on ART practices are responsible for 17% of NICU admissions, bringing about unacceptable financial and emotional costs. These admissions could be avoided. To reduce the number of multiple gestations, many countries have made SET the norm, and have drastically reduced the rate of multiples, while overall not affecting the pregnancy rate. We should take example from these countries.
E-PAS2008:634305.1

Sunday, May 4, 2008 9:15 AM

Platform Session: Clinical Bioethics (9:15 AM - 11:15 AM)
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