Posted By Posting
Jul 17, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
Sharon - Elyse's mom
Could you share a bit about what Elyse went through with the intestine stuff? If you want to email me offline that is fine too. Mathias' GI is hoping that the lab work we are waiting on will shed some light on why he has/had so much bile in his stomach. She didn't think that there was an obstruction based on what she saw but I know nothing about what can go wrong in that part of the body. Thanks! Libby
Jul 18, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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Hi Libby, Elyse had an intestinal malrotation that went undiagnosed until 3 mos old. It was diagnosed by a pediatric surgeon and pediatric radiologist based on UGI and barium enema films. SYmptoms were: screaming/crying, arching/posturing (a Sandifers level of arching/posturing!), vomiting multiple times daily, apnea, cyanosis, bilious vomit, barely eating, weight loss, and NO STOOLS after a while, even when given suppositories. She also almost never slept due to the pain. If you suspect this at all in mathias, i will tell you that the first THREE radiologists told us she was fine or that it was such a slight problem that it would not affect her, it took the 4th (a pediatric one) and a pediatric surgeon to tell us that it was actually a severe, life threatening malrotation. Its pretty rare, and they can still be pooping even with it because (TMI) it can squirt past a blockage until it gets too severely blocked. Or they can appear completely constipated. is he throwing up bile at all?

go ahead and read my story (click on my name) for a very brief story (which I have not updated in a looong time) and here are websites: http://kidshealth.org/parent/medical/digestive/malrotation.html.

http://www.healthsystem.virginia.edu/uvahealth/peds_digest/malrotat.cfm

Jul 18, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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i just looked at your story and saw "dyspraxia"....is it verbal dyspraxia? I am a speech therapist and childhood dyspraxia is one of my specialty areas :)
Jul 19, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
Thanks for sharing. I don't know what is causing Mathias' issues. I don't think it is a malrotation but I will add it to the list of questions for our follow-up GI appt. The GI found an abnormally large amount of bile in his stomach but he has never vomited any up. In fact he has only truly vomited a handful of times in his life. He has been cranky and "high needs" but all of his stuff has been silent - the aspirating, the reflux. Grrrr... We've always had issues with his stools being too loose. I am trying not to get too caught up in something until we have all of the lab results. Right now we are trying to get him comfortable on his new meds. Did Elyse have trouble with the Carafate? Mathias developed a rash over his entire body after 4 doses of the suspension form. It was helping with the stomach pain but we have to wait until the rash goes away in order to try the tablet. His dyspraxia is all motor planning or physical. OT has done wonders. He actually started talking around 12 months and has been a chatterbug since. It is amazing how these kids can be having such pain and are still smiling. Libby
Jul 19, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
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I didn't think mathias sounded like a malrotation kiddo. I hope his issues get figured out soon! Elyse did not get a rash or anything from the carafate, but it did not help her so we stopped it. GI put her on it for a couple weeks when she started spitting up blood until her endoscopy could get done (he couldn't find any reason for the blood). That's great that the dyspraxia has not affected his speech. It's a huge hurdle to get thru in therapy!
Check with your
doctor first!