One of our greatest concerns with Samuel Mao Ping's health was the nature of his bowel habits. As we got to know him better, we found that his bowel movements were very large, mixed hard and loose stool, and worst of all unpredictable. Patrick's intial clinical suspicion was chronic constipation but Samuel's medical report from China stated that he had a bowel movement daily.
We realized early on that his bowels were going to be an uphill battle in a variety of ways. Going on outings would difficult because of the unpredictable and expansive nature of his bowel movements. Secondly, fighting with a food insecure toddler (over type and quantity of food) was an issue, particularly as it did not ellicit a natural trust relationship. His bloated tummy was so unusual that we had to take control of everything right away...for his sake.
We were also worried about undiagnosed intestinal parasites as is the case for many internationally adopted children. Many child will look bloated with parasites but to complicate our situation the bloating would occassionally disappear?
We had so much difficulty trying helping Samuel regulate his bowel's in China we headed straight to the Pediatrician within two weeks of landing.
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| Saint Dad changing another monstrous dump...on the Great Wall of China! |
Once home Samuel's bowel habits were interrupting our ability to bond as much as they were simply "over the top" and messy. (That is bubbling over the top of the diaper no matter how tight we fastened them.) It was hard to hold our toddler lovingly when he produced such an unpleasant smell (BM and excessive gas) that it filled the ENTIRE house. The unpredictable nature of the bowel bloating/exploding cycle made it tenuious to go for errands as we never knew when he would "erupt".
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| Another mom screams..."there's DIARRHEA in the Canoe!" after one of the unexpected "explosions" in the mall playground. It was too much for me. I stopped taking him on excursions by myself. |
He once had an "explosion" in the playground canoe. I came home from what should have been an easy mall excursion exhausted, embarrased and in tears after a 45 minute interlude in the public washroom where I had to wash his clothes in the sink and dry them under the handblower. There was no way I could have packed that mess up in the car and drove home first. Others entering the bathroom gagged on the smell. I apologized profusely to the mall manager and felt obliged to state that he wasn't sick but had a medical issue with his bowels. I felt resentful that his bowels had me undersiege and housebound. The Pediatrician ran the full gamet for parasites and ova (including strongyloides)...after multiple stool samples and waiting 6+ weeks...it all came back normal.
However, an Xray to investigate his bowels left everyone baffled. It showed a grossly enlarged stomach pouch.
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| Sydney Su Yee's Body project at Preschool....yellow felt = stomach pouch close to the expected position. |
Samuels' stomach spans his entire abdomen from ribs to pelvic bone (much different than expected). His stomach was described as being 'markedly distended with the possibility of gastric outlet obstruction'. This led to an ultrasound and small bowel follow through test to track emptying time (barium and series of Xrays). These tests did not reveal anything unsual.
Patrick and the Pediatrician decided we should begin treatment for chronic constipation with an osmotic laxative. Certainly he had bowel motility issues and he needed help!
This has been life changing for Samuel and our family. When taking the laxative faithfully he is relatively "regular" and the bloating is minimalized. He also has stopped drinking water excessively which I now understand is part of chronic constipation syndrome. Amazingly he is now fully potty trained which was not possible before the laxative. BUT, if we stop or miss a dose we are back to the same old mess and unpredicatability. I would love to try an elimination diet with him but with the food insecurity issues it is not the right time. We are managing well enough though there is likely room for improvement.
Gastro-intestinal issues have certainly trumped any concerns with his cleft lip.
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| Bloated |
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| Normal |
The Pediatrician also sent Samuel for a sleep apnea assessment as he originally snored so much that we could not co-sleep with him. The repaired nostril is quite occluded so if he has any minor congestion he wheezes and whistles or snorts to get enough air through the good nostril. This test was also normal. Cleaning his good nostril daily (1-2 times with alligator forceps) helps with the snoring, whistling and wheezing. Good thing BaBa has a steady hand a lots of expertise. His congestion has slowly improved .
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| Slept like an Angel...despite the chaos that ensued around him on the busy Peds ward. |
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| Ready to settle in for the night |
Finally, Samuel is on a six month course of bi-weekly meds for Latent Tuberculosis. He is not showing any signs of active TB but his mantoux test was positive. His chest Xray was normal. He did have a BCG vaccine really late (age of 1.5 years) so this may be a false a positive BUT he also lived in the border area near the province of Henan which has a very high rate of Tuberculosis. We have no idea what exposures or risks he might have encountered in China prior to adoption (travelled to Beijing for surgery, foster family care, Group/Orphanage home etc.). China does not routinely test their workers for TB exposure. TB can be latent for up to ten years. Susan (TB unit worker) comes to our house to administer the meds twice per week. We are so thankful for how co-operative Samuel is right now.
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| Mao Ping and TB Unit Worker ...Susan |
So far the bi-weekly meds have not disrupted our regular routine but this will continue until the end of August and it means that we will not take any big holidays or travel abroad until the meds are finished. We will be able to holiday at our summer cottage so long as we visit local public health twice per week for the meds. SK law is that we are not allowed to give him the TB meds. Resistant strains of TB are developed if the meds are not given properly. There is no wiggle room even though Patrick is a physician.
We have been very busy medically with our precious boy. I hope we finally get the right diagnosis for his GI issues but without any family history it is like unravelling a big tangled ball of yarn. It will take a long time to sort things out. At least we are now managing symptoms adequately.
Samuel was born in a very polluted province with high levels of polycarbons from coal production. We saw this video and could relate to what we experienced in Taiyuan Shanxi :
Children of the Coal
He also lived near the Chinese "dead sea" (
Yuncheng Salt Lake) with very unusual mineral content in the water and soil. It may be that prenatal exposure to these environmental forces contributed to some of his unique physical findings.
Though there is no medical proof, both Patrick and I felt that Samuel needed to be "detoxified". We both noticed his skin and tears were very salty despite being adequately hydrated, his hair was coarse with a grey tinge, he looked "puffy" and in close proximity (reading stories) he triggered both of us to cough and sneeze. After four months of pollution free living and good food all of this has gone away. His hair is shiny and is less coarse, we can cuddle and rock without sneezes or coughs, his tears are less salty. An original blood smear found a high calcium, alkaline phosphatase and T3 but none high enough to be clinically relevant. Two months later the second screen showed every thing was normal.
So for now, we focus on managing day to day and are really thankful for the medical knowledge and tools that we have which have prepared us for this new journey with Samuel. We are thankful for the help of all those doctors, nurses and technicians that lend their expertise to helping our boy. We are thankful for medi-care and for the divine intervention that brought us together as a family.
p.s. Yes Momma you were right...God found the right family for the dirty little boy with the big belly! His MaMa is a dietitian and his BaBa is a really good doctor. Love you more for reminding us when we were flapping in the wind in Taiyaun!
"So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal".
2 Corinthians 4:18
“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.
2 Corinthians 12:9
