James' Symptoms

Before I carry on with my history of e-mails, I thought I'd write a little about James' first year and why I say that the description of LPI really suits him.

At four months of age James stopped sleeping though the night. I decided to try starting him on solids to see if this would help, but he absolutely refused to take them. Off and on the battle went. I would stop trying for a few weeks, try again, but we made no progress; if anything we were stepping backwards. As he got older he got smarter. Instead of spitting his food back out he would clench his jaw tight so hard that there was no way I could force a spoon into his mouth. At nine months of age we began to notice that he would eat things like ice cream, jello, pudding and all those type of yummy sweet things, so we spruced up his meals with lots of sugar and started force feeding him. This was not a nice task but I was at my wits end. I did this for a month thinking that eventually he would give up, but he didn't; his jaw remained firmly closed, and so I gave up again. Throughout these months of battles we would see short spurts where he would eat small amounts. We discovered his favourite solid food was Baby Mum-Mum's, and so they became a staple in our house. Unfortunately one day I decided to try a different variety (original instead of vegetable), he didn't like this and was completely turned off of the Mum-Mum's all together for some time. Eventually he did start to eat them again and this was always the most liked food for him; other foods he would enjoy in short spurts. We tried many different tricks and kept telling ourselves that evenutally he would eat, it was just the stubborn maternal Dutch blood in him.

The eating battle was the most obvious concern with James, one that we tried to ignore when we shouldn't have. Hindsight!! This battle is described as spontaneous protein aversion. How smart a child can be that at 4 months already he would reject pablum because it had too much protein in it. He was trying to tell us something all this time and we weren't listen to him ... altho he should have been more consistent in his message because ice cream and cream cheese cake are high in protein :)

The symptoms also mentions how children do well while they are breastfed. When looking at James' growth chart we can see how true this is. Shortly after he was weaned his weight dropped out of the 10th precentile to the 5th, and continued to go down from there until at 13 and 14 months he had fallen well below the 5th precentile. We can question if some of James irritability while nursing was due to this condition, but it is hard to say. I never described James as colicky (maybe because I was comparing him to Rebecca who as an all-time colic extreme). I usually would say he was a fussy baby or discontent. He was not always the happiest, he would nurse frequently (ever 1 1/2 to 2 hours - why did I put up with that??) and was often irritable, fussy and crying in the evenings (especially the first 4 months of his life) until 10-11pm. He kept me busy!!

I weaned James at seven months. It was a hard transition for him to go the the bottle and he did not like the formula, but eventually learned to drink it. Once formula fed, James had some vomitting episodes, as well as having bad gas and being discontent after a feed. At the time we thought this was due to the bottle nipples flowing too fast for him and so after trying several different kinds of nipples we found a good slow flow for him. Eventually the vomitting, gases and discontent settled down. Looking back we figure much of this was his body trying to adjust to the sudden increase in protein and it's surprising that he did so well and did settle down after a bit. Eventually formula became James' only staple.

Diarrhea is also a symptom that describes James well. James always had very loose infant-like stools. They were usually a yellowish colour and he would have 4-6 bowel movements a day. Even during the periods where he would eat some solids for 3-4 days in a row we still did not see any change in his stools. If he did eat solids we would sometimes see what he ate come back out a couple hours later, still whole. As well as having diarrhea he would also had a continous diaper rash. From one diaper to the next we would see a big difference. He could wake up with a relatively decent looking bum and after one dirty diaper he would have open, bleeding sores. It was a constant battle.

The symptoms also lists convulsions. This seems to explain what we thought were night terrors and recently more obvious seizures. These would happen when his body could not longer handle the levels of ammonia. It's scary to realize what these really were and how dangerous they could be.

As already mentioned, James has a large liver and spleen, which is also mentioned in the symptoms. We do not really know when exactly his belly began to extend. I do remember that when he was six months old we would have people comment that even though he wasn't eating solids he sure was a little porker...again, HINDSIGHT!
It is interesting to note that the doctors showed us what James lysine levels were. Please don't quote me on this as my memory is not that good, but regardless of how accurate my numbers are you will be able to see why they came to the conclusion this is what he has. A normal person's lysine count is between 89-400 (remember don't quote me). James' lysine count was 46,000. Wow!! How amazing our Creator is that he made our bodies in such a way that James could continue to function, grow, etc when something was so out of wack.