Posted By Posting
Jan 11, 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.
i have been searching...
I have been going back and forth about this Hirschprung's testing with audrey, I know it shouldn't be such a big deal but i mean... Emily has been through soo much testing, all of which have been very helpful, but none have lead to a diagnosis or made her feel a lot better. I am just soo worried that i am going to put audrey through a biopsy (anesthesia included) and they won't find anything. I have read medical sites that say that HD can be missed if the biopsy is not done large enough, especially if it is short segment like the GI thinks it might be...

on the other hand i am worried about her. she has been arching and not eating as well. the day before yesterday she stayed up all night until 5am, miserable and crying out. last night she was refluxy (she was from birth to 3 months then "grew" out of it but it was never GERD) and i gave her mylanta and she was able to sleep. she was MISERABLE this morning she screamed and screamed until she pooped just a little bit and seemed a little bit happier, she quit screaming at least. but she was not fully comfortable. this is not like her.

She is getting two teeth and they are poking through i have been giving her tylonol and teething tabs and orjel... i honestly do not thing teething is hurting her THAT much, what do you think?

i have been searching the web for stories or experiences of babies with HD and have not come up with much cept rarely visited boards that contain vague experiences, i wish i could find some comparison stories. I have to tell you all, i am this close to calling up the GI tomorrow and crying to him asking if he really thinks this is necessary b/c he has freaked me out so much. i just wish i knew what to do my "gut" is telling me "i'm done worrying! run and hide" lol
Jan 12, 2009
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.
I can totally relate to what you are saying about the fear of putting her through it and not finding anything.

Have you gotten a second opinion, or asked your pedi. or another physician that you trust?

I am sorry she is having such a hard time, thus u r . May she feel better soon. I can't really say what to do about the HD testing as we are in the same boat for mito. testing and it is a hard decision.

Just follow your instincts.

Jan 12, 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!
http://digestive.niddk.nih.gov/ddiseases/pubs/hirschsprungs_ez/#6

I looked at this...why can't they do the other tests before doing the biopsy? Those aren't nearly as invasive. You know that I have no clue about this but I'd rather start with the simple tests if it were my lil one.

Jan 12, 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.
yep i found all sorts of technical websites, but i wanted parent/infant experiences, thank you though! GI said it's easier to get a definite answer for the biopsy then to do a xray test that might not show anything but yeah i agree i would rather do less invasive first...
Jan 12, 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.
Hi Kat, you must be going nuts with all this. Does Audrey have a lot of gas and become ditended at all? Has she ever had normal BMs for weeks at a time? Does her stool collect in the rectum, or do you notice that when you've given her suppositories that her rectum is not so full? Has the Dr mentioned segmental hirschprungs?

I've written this before and I will mention it again. When Jazzy was going thru constipation episodes, we had tried EVERTHING, from prunes,colace, miralax, etc.. and NOTHING helped. Before any procedure, my Ped. suggested we try a motility agent, like Erythro or motilium. I know most Dr. perscribe this for upper GI issues, but it can help for constipation as well. Also, if Emily has motility issues ( and diarrhea is a form of altered motility), couldn't they try a medication before resorting to an invasive procedure? Poor baby....

Jan 12, 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.
audrey dosen't not get super distended, not anything like emily does.her belly does get really hard, she does not pas a lot of gas, and when she does it is incredibly painful for her she will scream before and during.

i never had trouble putting in suppositories. I remember before she got the gastrograffin enema the GI said he could feel a lot of stool in her belly but during a rectal exam he said there was not stool in her rectum. now that i have read up on HD that kinda scares me. The GI did mention segmental HD when i questioned why he thought she had HD again, i told him that i thought i read that HD was the whole colon and he said that it could be all but it also could be parts.

now what gets me it that he wants to do the biopsy but what if he biopsies in an area that has nerve endings but she does have HD. so now i am leaning towards, a barium enema- but that too can not be conclusive in dxing HD..

she has never had "normal" bm's at at a time if she has they have been from high doses of laxatives or they have been watery diarehea. She did poop little bits today and yesterday, they were not hard they were quite soft but she had the hardest time with them she would cry on and off half hour intervals non stop all day... i also asked again about reglan and ees and he said no, the dr was at a diff office today so i will call him all day tomorrow to talk to him about this..
Jan 13, 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 if you decide to do the biopsies, I would mentiondoing several small biopsies in different areas to cover varius parts of the colon etc... I'm sure they know about this but hey...it never hurts to remind them. One of my patients had HD-segmental, so if I can answer any specifics, let me know. I hope your Dr can help you out today..GOOD LUCK!!
Check with your
doctor first!