Posted By Posting
Sep 13, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
testing logic- in circles
i have been thinking about this testing stuff since the GI brought it up on monday. I really want to do the right thing and what ever is best for Emily, I kind of know what I want to do but... i also kind of don't; so if you don't mind i am going to subject you all to my ramblings and see what you think.

the GI wants to do a 24 hour PH probe and a Milk scan to retest her delayed gastric emptying.
thoughts on Milk Scan
-We will find out without a doubt that she still does have DGE.
-We will find out that that more then likely is the cause of her reflux.
-We can't do anything about her having DGE b/c she had a bad reaction to Reglan and is not a candidate for EES b/c of her kidney reflux.
-We already do small light meals.
-I kinda think that she does have DGE b/c her Upper GI Series and Small Bowel Follow Through tests took nearly 6 hours when average for pediatric is less then 3 hours. She also had substance in her stomach despite not eating for 10 hours (more then likely oatmeal from the night before)
-I kinda think she doesn't have DGE anymore b/c she doesn't spit up anymore, but maybe she taught herself how to stop eating before she feels bad??

thoughts on PH Probe:
-If they do the test what do we find out? we find out she refluxes?- duh.
-if it's non acidic then they take her off Prevacid
-I've already taken her off prevacid and she was more miserable off then on, so my thoughts: ph probe proof or not, she did better with prevacid.
-they could actually find out that her reflux is worse and could be controlled better on another med even if her EDG only showed minor inflammation.
-if the Ph Probe comes back normal then they will still want to do the Milk Scan to find out why she is refluxing and i'm back to square one.

it's just that i don't think i can do testing for the sake of testing unless it is going to 100% benefit her. I have Audrey now so taking care of her and doing emily tests would not be easy- i have no family that would help out and DH works all the time. I don't know any perspective, good bad or different would be appreciated!
Sep 14, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Ugh, this is exactly what we have been going through trying to figure out how to approach testing with Lorenzo. I don't have any sage advice, short of follow your instincts (if you're not too exhausted to identify them :) ), but I do just want you to know that you are not alone in this struggle to figure out what path is best. I think it's one of the hardest things about parenting in some ways....
Sep 14, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
Wow, I don't have any advice either. I'd be inclined not to do either one, because there won't be a (positive) change in treatment, but I guess if you did them, then you'd know for sure. Guess I'm no help at all...like the pp said - trust your instinct. You've been dead on so far...
Sep 14, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
When Meggy was last hospitalized for failure to thrive, one doc insisted she needed another PH probe. A lot happened in between, but to make it short I will tell u the end. I refused the PH probe till I talked to a GI I knew better and straight out asked what will this provide that we don't already know? She said nothing! I asked will it change or affect anything treatment wise? She said no! I said, then is there really a point in subjecting Meggy to this when it is torture to her? Her answer was no.

Everyone has to consider their own circumstances. It looks like u already have. Unless there is actual benefit or help from the testing, why do it?

U r both right. The testing is a very hard decision. After watching Meggy go through an eye exam for a scratch they could have just treated or waited till there were signs of infection, I asked myself-what am I doing? Why didn't I think it through to ask ahead if we could just wait for signs of infection instead of holding the child down, spraying liquid in her eyes, shining a bright light in her face, and scaring her half to death. The truth was, I was just too tired from the endless nights to think it through rationally.

Regardless of how tired I am now, I keep reminding myself of this and make decisions of a lot of testing based on this thought.

The last time Meggy had to have head x-rays (she had hit her head pretty hard- and they had already thought she might have cranial stenosis-fused sutures at an early age) I saw a look of fear in her eyes that I had never seen before. The look reminded me of the phrase "scared to death"

sometimes the testing can't be avoided. Sometimes there is more benefit than risk, but sometimes it is just done as routine not out of necessity.

It is hard not to hog post like this cause all the things Meggy has been through. Most of it the docs could have avoided, and spared her the torture. It makes me sad to know many don't consider her a whole person. They don't consider her mental health. Many say they could care less if she is in pain because she can get past it. They tell me she won't remember the pain. However I truly believe all of this will affect her in some way during her life. She may not remember specifics, but I am sure she will remember that she was in pain and scared.

Sep 14, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
not that i want you to but i am glad you know how i feel about lorenzo, hopefully meggy's mom's post kinda helped you out as much as it helped me. and donessa you are absolutely right, it really is not going to change the course of her treatment i think they just want to "know" things b/c of her CSID. I guess i am just freaking myself out b/c i have refused a few tests and stool samples already, i am just worried that they might think i do not have my dd's best interest in heart and nay not be as willing to help in the future. ( i know deep down thats not entirely true, she has wonderful drs but still kwim??) And Engin your post helped me tremendously Meggy seems like such a sweet heart i hate that she has been through so much but it has given you insight to give me perspective, that is priceless. I was taught in both psychology and in biology that fear is one of our most basic emotions, long term memory or not that is horrible that most doctors feel that way to overlook that. thank you again *hugs*
Sep 14, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
With the DGE.....IF it is bad enough they can suggest a pylorplasty. You will not know how bad it is unless you do the GES for the DGE. The pylorplasty would open the pylorus and allow the food to pass quickly. there are some side affects to this and the #1 issue is called "dumping syndrome". This is where the food passes too quickly and the blood surgars can drop drasticilly.

I know some others who have tried boto injections of the pyloris with some success as well. The down side to that is the relief is temporay. It has to be done again and again.....ect.....

I'd personally forgo the ph probe. Esp. since you alread had an EDG and it showed little irritation. JMHO though.

With wn UGI that took that long I'd seriously look into doing the GES and seeing how that goes and then looking in other options besides EES or Reglan.

If they are that bad I woudl also look into going out of state and heading to one of the top motility clinics, Again JMHO....you can learn sooo much from them.

Good luck

Sep 14, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I meant to say "botox" injection on the pylorus..LOL
Sep 14, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
that's funny i read it as botox lol i was hoping you would chime in thanks!
Sep 14, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
Check with your
doctor first!