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Old 08-20-2012, 09:33 PM   #1
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UPDATE in OP 08/28 Hoping to be on the road to a diagnosis tomorrow...

My son is 13 months old and weighs 17 pounds, the same as he weighed at 6 months. He literally looks like a skeleton with a pot belly. He eats but literally refuses everything to drink. I have the best luck with water but even that is a fight and he may take literally 2-3 ounces of it a day.

He can't gain weight and has been having intestinal issues since starting solids at 9 months old. He goes 5-7 days between poos. He literally stiffens straight as a board and screams and shakes when he poops. Every. Single. Time. He throws up when eating often, has unexplained bacterial infections he has I take Rocephin injections for, the little fellow is not well.

Wednesday night we had to take him to the ER because his belly literally looked like he would explode. He had had a good bowel movement that morning. He had a fever of 100 and the abdominal X-rays showed a massive backup in his colon. They gave him am enema and he did not expel the fluid for over an hour which had them all amazed as they said kids usually
Get rid of the fluid immediately. He had a small BM later that night but no massive one.

We are traveling 300 miles to a ped GI tomorrow and it looks like e may have Hirschsprung Disease. I just hope we get some answers and I about cry every time under my guy without clothes. You can literally see every bone in his body and then his belly sticks out like a malnourished third world child.

As an aside I have tried every liquid you can think of and he literally screams and hits it away, tried every cup nada. He does have wet diapers maybe 3-4 day I guess that is from the water in his food. I am so worried and just hope we can start to get some answers. We live so rural the closest ped GI is 300 miles away as is the children's hospital.

Does anyone have any experience with digestive issues? I am ready to tell them I it a feeding tube in him but not sure that is the answer because he does eat. He just wot drink ad can't gain weight. He also weaned about 2 weeks ago and never took a bottle. He weaned by his choice I guess my supply dropped so much in my second trimester.

UPDATE: 8/28/12
The ped GI called yesterday and said that he was kind of puzzled by the rest of the tests. He said that his stool test showed pancreatic enzyme insufficiency. It also showed a trace of sugar/carbs, which he said would not be a huge deal if he drank juice regularly but he does not. The most common cause of the pancreatic enzyme insufficiency is CF, but his sweat test was negative, thank goodness. He said there was another syndrome called Shwachman-Diamond syndrone but he did not have the low platelets associated with that.

So for now we are going to supplement with vitamins for the low Vit. D and he thinks all his other fat soluble vitamins are prob. low also though he did not specifically test them. Just one fat and on water soluble. We are also going to start pancreatic enzyme replacement therapy with each meal and snack and see if that helps his weight.

We are waiting on unsirance to "medically review" the need for the Neocate Splash juice. The GI sent in all the necessary paperwork for that last Friday. That could take up to 30 days. In the meantime I am just going to order enough for him to have at least 1 a day.

I am also thinking of giving this a couple weeks then making him an appt with a ped. endocrinologist at the childrens hospital in Salt Lake City.

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Old 08-20-2012, 10:38 PM   #2
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Re: Hoping to be on the road to a diagnosis tomorrow...

We have some similarities. The ped had us evaluated for Hirschsprung. My DD has what they call 'oral motor' issues. We went on for a long time with very low fluid intake. They tried saying it was 'behavioral' "Some babies just won't drink". They tried place an NG tube, but she'd pull it out. We were on track for a g-tube... In the end it was oral motor issues-she couldn't drink well and it was so difficult she just didn't. She could eat food just fine. In the beginning of the Summer we found a straw cup she could use successfully and almost over night went from approximately 10 ounces a day to 30+. This also has cured our chronic constipation-she could go forever without a bowel movement-usually taking a suppository to get her to go. Just wanted to share this in case it helps at all!

ETA-our daughter has Noonan Syndrome.
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Old 08-20-2012, 11:00 PM   #3
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Re: Hoping to be on the road to a diagnosis tomorrow...

The only reason I would recommend a feeding tube at this point is to get fluids in and if we are talking just a short term fix until they can get the motility going a nasal gastric tube might do. A GI tract does not function well even in healthy individuals when they are dehydrated.

Yes, I have given my son 2 mineral oil enemas in a row without results for hours. He was in a severe gastroparesis episode. I don't know if the 2 enemas worked or if it was the 30mls of lactulose I had to slowly force down his g-tube (it felt like trying to shove liquid through a brick the pressure was that severe) but we finally got poop several hours later. Ped GI added Magnesium Citrate (OTC drug) in which seems to work better then the enemas and Lactulose. We are also starting another motility drug trial.

During severe episodes ds breath smells like poop, brown substance that looks like fecal matter leaks from his gastrostomy tube and he runs low grade fevers. Sometimes he is in pain during an episode but sometimes he is not. I have no clue why some episodes hurt and some don't. We have a Rx protocol for pain Carafate, OTC Motrin and occasionally Tylenol with Codeine.

Hirshsprung's is usually the first thing they suspect so unless they have extremely specific reasons to suspect Hirshsprung's I wouldn't put much stock in it yet. Lots of kids have motility issues for many different reasons. They suspected Hirshprung's when my son failed to pass meconium instead they found a whole slew of problems that had nothing to do with missing nerve endings.

Last edited by mekat; 08-20-2012 at 11:20 PM. Reason: incomplete sentence
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Old 08-20-2012, 11:54 PM   #4
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Re: Hoping to be on the road to a diagnosis tomorrow...

Crude! I missed the part about being 300 miles away from a pediatric specialist. In your situation I would opt for g-tube but only if the ped GI can give a good reason why it will improve outcome. I would be too nervous to have a child on an NG that far away from help.

The description I typed above in my previous post is of my 8yo and he is a 100% tube dependent and has sigmoid loop colostomy and his issues still happen. The 2 GI stomas make things easier for us but they don't exactly solve his motility issues although I have no doubt in my mind he would be dead without the gastrostomy and seriously ill possibly even fatally ill without the colostomy.
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Old 08-21-2012, 04:01 AM   #5
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Originally Posted by mekat
Crude! I missed the part about being 300 miles away from a pediatric specialist. In your situation I would opt for g-tube but only if the ped GI can give a good reason why it will improve outcome. I would be too nervous to have a child on an NG that far away from help.

The description I typed above in my previous post is of my 8yo and he is a 100% tube dependent and has sigmoid loop colostomy and his issues still happen. The 2 GI stomas make things easier for us but they don't exactly solve his motility issues although I have no doubt in my mind he would be dead without the gastrostomy and seriously ill possibly even fatally ill without the colostomy.
Well I am a nurse and have placed and maintained NG tubes so am not scared about them, it is keeping it down my son that will be the problem! And personally I don't want to have to be he one holding him down and replacing it over and over.

His X-ray was indicative of Hirschsprung which is why they said it. But, they are by no means a primary tertiary care facility. I am in SE Idaho in the Teton Mountains near Jackson, WY and we are having to drive to Salt Lake City to the children's hospital there.

We finally got some good results from using a double dose of Miralax for about 3 days but I can't see doing that long term. It took all day to get that in him with only 3 ounces of water. Even then one day I had to dump it in his food to get him to take it and then it made his food like soup. I am just so frustrated and worried!
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Old 08-21-2012, 12:59 PM   #6
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Re: Hoping to be on the road to a diagnosis tomorrow...

I would at least start with an NG, and honestly, if its going to be more than a couple weeks, PUSH HARD for a G. My son had an NG for 3 months, and it was miserable for everyone. G tubes are so much more humane for little guys!
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Old 08-21-2012, 06:50 PM   #7
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We saw the ped GI, who was wondeful and said something was definitely going on. He said the location of the stool was not normal for and was not constipation. We are staying the night and go to Primary Children's Hospital in the morning for a battery of tests. He has a list of about 20 blood tests including ones for nutritional assessment, RAST tests for whey and casein, celiac tests, Iga's ige's, metabolic tests. Then about 10 tests on his stool, and a sweat test for CF.

He said he was definitely underweight but did not label him FTT. Said he was getting enough calories he should be gaining weight. He is losing the nutrients somewhere. He only weighed 17-10 today clothes with a medium prefold on. So realistically it was a lot less than that. He saw how his skin on his arms and thigs just hangs and they saw all his bones in his back, ribs,and shoulders while he was crawling in diaper only. His little scrawny arms. It breaks my heart.

Depending on those tests we may proceed with colonoscopy and EGD. No mention of tubes yet. I guess we will see what the tests say. His stomach is still visibly distended though it is his normal. Definitely not like he night we were in the ER.
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Old 08-21-2012, 09:57 PM   #8
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Re: Hoping to be on the road to a diagnosis tomorrow...

Hugs mama! Please keep updating the thread! We will be thinking of you tomorrow, and hope you get some answers.
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Old 08-22-2012, 07:29 AM   #9
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Re: Hoping to be on the road to a diagnosis tomorrow...

Thinking about you today. I hope you get some answers and please update when you can.
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Old 08-22-2012, 11:27 AM   #10
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Re: Hoping to be on the road to a diagnosis tomorrow...

I am glad the doctor is taking it seriously and being aggressive. Hopefully the tests find something so they can help your son.
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