Posted By Posting
Jan 05, 2009
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.
Girl's GI Apt. today
Emily and Audrey saw the GI today. He spent a little over a hour with us. I asked a long laundry list of questions and told him my concerns with the nurse that gave some not so practical advice. SO the just of the appointment was on both girls, wait and see...

emily, she still dose not have a clear diagnosis and he admits he probably will not be able to diagnosis her with anything until she was older. her symptoms are in a holding pattern and until they get worse or changes there is nothing that we can do for her. the biopsies of her colonoscopy were "unremarkable" as the GI said. I totally forgot to ask about the Esoniophils! (sp?)

he said he will not dx her with irritable bowel but does feel she has symptoms, but those symptoms match soo many other GI things... she is too young for pain meds and he fears that the side effects of the meds will be worse then the original symptoms, especially with emily being on and off with verbility he dosen't want ot chance it.

he wants to do a Ph probe and the only reason he wants to do it is to document her symptoms, it will NOT change her current treatment. I am not crazy about this. I asked about the Impedance probe, and he said in emily's case Ph Probe is just fine. there are NO hospitals close (in florida) that offer that technology and the only way he would think Impedance is necessary for emily is if she, for example, had chronic pneumonia and what was, what i claimed, refluxing; the impedance probe would tell if it was non acid and how high it was reaching. (a esophageal motility problem, like the first GI said) since she has all of the symptoms of acid reflux, unless the ph probe comes back negative he does not feel she needs the impedance probe. so 2 doctors are at a NO on impedance probe.

Her chronic diarehea alternating with constipation will be noted but it is not life threatening and she is not loosing weight and she is gaining fine, she does not appear to have these symptoms from allergies so gluten free and lacto free are a consideration but NOT recommended (he feels we will see a weight loss then)... probiotics are kinda a shot in the dark (if it works it works, it dosen't...well, it dosen't...) we tried them for emily activia yogurt and culturelle with no difference, so well since she is unresponsive to them she is the ie. shot in the dark. Insoluble fiber was talked about for constipation and soluble fiber for diarehea but since she has more diarehea then constipation fiber is not recommended either. just for us to keep with what we are doing and just wait... :(



and Audrey. Audrey Audrey Audrey... the gastrograffin enema xray showed audrey was very constipated and it also showed "slight" narrowing of her colon into her rectum. (i think this is what he said) This can be inconsequential and cause benign short term (until her body/muscles learns to overcome it) constipation, OR it could be Hirschsprung’s disease. I told the Dr. I looked up HSD online after he suggested it and said that i thought i read that it caused constipation with NO ability to poop at all. Audrey has gone on her own a few times but only after days or hours of pure discomfort and screaming. He said that there is a mild form that is lesser known and potentially more dangerous, and there is a possibility that A has that... i am PRAYING for the first but from the sound of his voice i think we are headed for a biopsy. the way he said it too, "suction biopsy", he even went in depth to explain the procedure and he NEVER explains procedures (without me asking- ie. i had to ask him about the impedance probe- i didn't have to ask him about the suction biopsy) unless he intends to do them. He is giving her 4 months, if he is not comfortable with her bowel regimen by then he will request that test. Her weight at 15lbs is fine by preemie chart but low on standard. no stool was felt in her belly but i gave her a suppository yesterday. we are to absolutely, by no reason from now on except his own, to resume suppositories. mirilax will have to be it for now.

so wow i wrote a book, bless you for reading so long! lol
Jan 06, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Poor Audrey. That has to be awful for her. Four months seems like a long time, but I guess it'll fly by. Maybe by that time, she'll be doing better.

I still don't get the big diff between the pH probe and the imp. probe. When I google it, it sounds the same and doesn't a pH probe show the acidity? So I'm confused. Poor Emily too, going through all this would at least be easier for you if you knew what's causing it.

Jan 06, 2009
megamason
MegaMan's mom
HD
My son has hirschsprungs and had that suction biopsy done. He had surgery at 6 weeks old to mostly correct the problem. If you have any questions you can pm me. He had short segement- basically they cut out a small section of his intestines that did not have nerve cells and pulled the good part down. He was diagnosed after 6 weeks in the NICU after multiple x-rays, upper/lower GI studies. They did the biopsy at the same time as the surgery- they new he had it, it was just a matter of finding out where the working vs non working section was located. In our case it was a small section that completely did not work as opposed to a larger section. Try not to get freaked out- the stuff you read can be SCARY and in our case it was much more mild. Evelyn
Jan 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Wow, I am a little biy shocked by the GI's suggestions, or lack thereof regarding Emily. It sounds like he doesn't want to ackle her case anymore. Weight gain or not, if she is in pain there may be damage going on that can be determental further on down the road. Not to mention the stress that chronic pan can cause. I would say NO to the probe for documentation purposes. You know already that she is refluxing, which is what it's for. Some Dr. check to see if Meds are effective by doing a probe, but that is not what it should be used for. Once the diagnoses is made, they should aim at treatment based on symptoms.

She sounds like Jazz in so many ways it's scary. If there is anything I can do to help just let me know. It really sounds like they just don't know what to do for her anymore so they are giving up. Giving her pain medication to see if there is an improvement for a very short time would not do her any harm long term...KWIM

And poor Audrey, 4 months does sound like a long time...gotta run for now, will be back....

Jan 06, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Sorry, my post sounds a bit preachy. But it angers me to hear Dr. talk that way. It sounds like they left you high and dry.

As for poor Audrey, I understand why he wouldn't want her on anymore suppositoires, but if miralax is NOT working, then you guys need an alternative.

I also wondered if they could do a Broncoscopy for Emily instead if they really feel that a test must be done? An ENT can do one in about 5 seconds and see if there is any irritation caused by the acid at the top of her esophagus. It's very quick and easy? Just a thought. Again, it is a diagnostic tool only and I don't know why they wouldn't take your word for it, she's already been diagnosed. Ok, I'm getting preachy and ranting instead of offering support. HUGS!

Jan 07, 2009
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.
from what the dr told me the impedance measures acidic and non-acidic reflux. it measures the levels it reaches into the esophagus, and from what my GI told me, done in cases where esophageal motility problem (motility meaning, muscles unable to coordinate together to push food down or if they are coordinating backwards) is suspected. which from his explanation i am fine with emily not having a impedance b/c i am pretty positive she has acid reflux, i am strongly considering just doing the ph probe just so i can see if it will get her into a better specialist. but at the same time, i don't want any more tests! :(

thank you evelyn it is pretty scary to read about HD. small section is what he thinks she has. I wonder IF we had had our insurance problems settled earlier if we would be done and over with wondering and would have a surgery already... i thought the biopsy news scared me but the prospect of her going into surgery scares me more. i think he wants to wait 4 months to see if i caused he to become dependent on suppositories or to see if her muscles can develop more. i just wish that when you searched on google or yahoo you could find stories of how peoples kids acted and not just clinical analysis symptoms. my e-mail is wicked_lg@yahoo.com i would be greatful to talk with you some more.

brenda i didn't think you sounded preachy, i honestly think he partly wants to do the ph probe b/c of her CSID diagnosis, to document how serious her reflux is. i do feel kinda like we are being left high and dry too, especially today emily had a bad day... but i discussed with Mil (who has IBD/UC) about the antispasmodics and anti inflammatory meds and she said the side effects to for her were bad and since emily can not fully express herself we thought it might be a bad idea. the dr told me the same thing (w/o me telling him what mil and i talked about) i don't know what to do but if a med is going to do more harm then good then maybe no meds is a better choice...

and with audrey... we have a long list of things not working for her, milk.soy free, sugar water, prune juice, apple juice, pear juice, lactulose/enulose, mom, mirilax even the enema; she took 45 mins after to take a b/m. she maxed out on all the doses and it only worked on her if i gave the highest dose two times a day for multiple days and she was miserable when i did that. i begged for an alturnitive but according to them, age and weight wise, that's all they can do besides the biopsy. i think tomorrow i may schedual her an apt with the new GI too...
Jan 07, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Well only you know what's best for your baby. It's just too bad that they couldn't give Emily carafate to cycle off and on, or for breakthroughs. If it gave her relief once before then she obviously has some reflux issues going on....right? Just too bad they aren't more helpful to you......
Check with your
doctor first!