Posted By Posting
Jan 14, 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.
GI called back -audrey
So as Audrey was screaming from being up mostly all night i get a call back from the GI. I had called him to ask some questions and get a patient comparison on A vs. other HD babies. Now i am confused.

i told him that she was spitting up and only eating a little bit, she was very uncomfortable and screamed until she pooped a little bit the other day, she also has painful gas. I asked him if Hirschprung's was painful and he said HD babies have NO ability to poop at all. This confused me b/c in his office i told him that A pooped a couple times, (watery poop or firm "sticks") and he had said it sounds like HD to him which is why he wanted the biopsy. Also things i read said baies with short segment HD can.

then he said he reviewed the films (again) and radiologist commentary (who was NOT a pedi radiologist) again from the gastrograffin enema and he said a bunch of dr. words i can't remember something about narrowing and colon size. but everything he was saying was going against all the stuff i read on HD- but hey i'm not a dr...

so i ask what this means he said he does not want to do the biopsy any more- which is funny b/c i said i did and i was against it to begin with. he said he thinks i should continue with the mirilax (doesn't 4 tsp seem high for a almost 15lb baby?) and he thinks i should add in mylanta anti-gas b/c she is refluxing and gassy, probably b/c of teething and intro of foods- not related to her constipation.

so okay i'm glad he dosen't think she has HD any more but i am still very worried. that's a scary dx to just throw out there then pull back, so i guess we will see...
Jan 14, 2009
zack'smom
Zack born 09/28/07 @ 31 weeks. Dx silent reflux @ 6 mo. Now not so silent. Switched to Elecare @ 9 mo. On Prevacid 15mg 1x daily. Looking to stop the puke and gain some lbs.
Puke stopped about 24 months and he's learning to eat...very slowly.
Still on prevacid and periactin.
this is why i hate hate hate talking to docs sometimes...they are fast and confusing and you end up MORE confused that you were to begin with...why can't they SLOW down and speak like normal people?
Jan 14, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
There are forms of Hirschsprungs in which kids do have some ability to poop, I think it depends on what parts are affected....post this in motility om P2P...

from cinncinnati childrens hosp

What are the symptoms of Hirschsprung's disease?

Eighty percent of children with Hirschsprung's disease show symptoms in the first 6 weeks of life. However, children with only a short segment of intestine that lacks normal nerve cells may not show symptoms for several months or even years. While individuals experience a range of symptoms, the following are the most common:

* Not having a bowel movement in the first 48 hours of life

* Gradual marked swelling of the abdomen

* Gradual onset of vomiting

* Fever

Children who do not have early symptoms may present with the following:

* Sepsis (overwhelming infection)

* Constipation that worsens over time

* Small, watery stool

* Loss of appetite

* Delayed growth

Jan 14, 2009
mommy2max&lucy
Patti, mom to Max (3/04) with EE and chronic sinus issues; Lucy (6/07) with reflux
Poor Audrey. I don't have any answers, but just wanted to say I was thinking of you. Lucy had horrible constipation as an infant...for her, starting food really helped...hoping you can get some answers soon!
Jan 14, 2009
jeddsmommy
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
Ya know Mystery Diagnosis did a show on a child who had cronic constipation ALL his life and was finally DX with HD at like 3 years old. I forgot hwo thye got to that point though. For him they didn't want to in his past give him the DX of HD because eventually he did go on hi sown with TONS and TONS of help. Just thought I'd through that out there.

The next time a DR is saying somethign you can't understand ask them to re-explain it. They should be MORE than willing to do it.

Jan 14, 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 read a lot of stuff about HD so far and it seem entirely possible that a kid could be dxed at 3 in the less serious short segment cases i have read. The reasons i am so concerned is b/c 1)she didn't pass merconium on her own, she did with help shortly before 48 hours. 2) she is not a great gainer/eater. 3) high doses of laxities seem to have little effect. Food in combo does not seem to be making it better. all things that point to it

but on the other hand maybe she dosen't have it b/c she isn't throwing up (but she is refluxy, something shes normally not) and her belly isn't distended i guess at this point it's a wait and see and HOPE she dosen't end up with some awful stomach bug that almost kills her before they end up with a dx- which happens with most older infants with hd. i am just a great big worry wort sometimes i think ( i hope that's all this is) lol
Jan 14, 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.
I find that really bizzar, after everything he has already told you. And 4 tsp is a lot of Miralax for a baby of her age. I hope that at least she gets some relief at that dose.

Jessicalynn is absolutely right about some LO's being able to go on their own sometimes. Some with HD can go in very small amounts on their own, as did my patient (16 month old baby). I don't think you're a worry wart at all!!! But did the GI give you a time frame for this dose of Miralax to work? Because if you don't see results in X amount of time, I hope that the GI will be on board to go to a plan B. I hope that poor Audrey poops a bit more now!

Jan 15, 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.
no no time line, she was on this dose before about 2 months ago (for a month). i took her off b/c it made her miserable and went back to suppositories... i stopped worrying and figured with food (prunes, pears and juice) things would get better... nope. She has been on this dose for about a week and a half with mangoes and pears and sweet potatoes and water with only 2 small bowel movements the first being very watery the second being small pieces and mucus

i just read a whole bunch of stories about HD from http://www.hirschsprungs.info/success_brenda.html they all sound so much like audrey it makes me want to cry, i think tomorrow i will call the GI again just to make sure. if he dosen't want to do anything i am going to get a second opinion... i couldn't stand it if she ended up like those poor angles who didn't find out the had hd till the last minute but had all the same symptoms as audrey
Jan 15, 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.
Good idea.....has anyone suggested stopping the solids until she is diagnosed? Or at least going on her own a bit better? Might be easier on her system???? Good luck...
Check with your
doctor first!