Thursday, June 1, 2006

The good news is ... things are finally going somewhere now. For all you who had this false impression that I'm such an organized person ... haha ... you should see what a mess I am now trying to keep up with everything ... I like my home ... I don't do well when I'm seldom to never home ... and that's what it's felt like lately.

I must say, most of the past month was mildly busy ... but not so much because of James, more because we finally felt he was ready to venture a little further out ... and this meant catching up on some missed things and getting back into the routine of other things. So I started visiting again, bi-weekly book club meetings, Early Years, the park ..etc. The girls were excited to be able to do some of these things again. James had his regular Dietician and OT appointments ... throw in a few ortho for me and Marietta, specialist for myself ... boy the calendar does fill up quickly.

So where to start ... the beginning is usually the best ... and for the most ... not much happened this month ... until the past week. We had been slowly ticking the time away, waiting for the next Pediatrician visit, which was scheduled for May 29. At this appointment we hoped to change James' formula again as well as push that he see a GI Specialist sooner.

Over the past month the Dietician and OT had been by almost weekly and I was charting most of James life to see what we could figure out. We played around with his formula. He took the transition to the new hypo-allergenic formula quite well and the diaper rash disappeared, but the stools did not thicken. So we tried adding rice pablum to his bottles to increase calories and maybe thicken the stools. We reached 2tbsp per bottle and that was fine ... once we went over that he became cranky and refused to take the bottle. We also considered that because this is not a high calorie formula he was drinking a more then before (usually 40-43 oz day), so it would be hard for the stools to thicken unless we changed formulas (again) to a powder form that we could concentrate to make it high calorie. The pediatrician has to change the formula, since it is a prescription, so we were waiting for the appt to do this.

We have not worked on getting him to eat solids. The Dietician and OT strongly felt their was something GI (Gastrointestinal) going on and until that was sort out they could not do anything in this area. Our main goal over the past month was to get him to gain weight. We did well for a period, but then he lost again and now he's holding around 20 1/2 lbs. As I mentioned before getting into GI would take 4-6 months. They felt that this should be sped up and hoped their report to the peditrician (which I take with when I go for the appt) would help to speed things up, their other option was to try hospitalize him, but at the time he was gaining weight and as long as he did that it would be hard to do.

With our upcoming holidays I was concerned about whether we should still be going. The dietician and OT assured me that it should be fine (and I have since got the same okay from the other doctors), we had a month yet to figure out what formula works for him and that's all we needed to do. Which brought me to the realization that he would be 19 months old and still only drinking and I became concerned that each month that ticked by would only make it harder to train him to eat. They did not feel this to be a problem. They have watched him attempt to eat and see that he has the skills to. He can feed himself, has the motor skills, knows what to do with the stuff, is able to chew and swallow. Once we can figure out what makes him refuse to eat he will probably go ahead just like that. They only want to see that he continues to use these skills or he could lose them. This means that we continue to go thru the routine of feeding him, this is not too hard in a family setting as ours as we all sit down together for meals anyways (guess that's not so coming in the "world"). He wants to join us at meal time anyways, and we've never excluded him. He has a short attention span though and cannot stay in his high chair long and he starts to fuss and annoy us all. He has to learn to stay in the chair for a reasonable amount of time (about 15 minute at his age) and then we let him out ... we have to be careful that he does not associate dislike with the feeding pattern/schedule. This is where it's handy to have the playpen in the dining room. He also knows that when he's done playing with his food he goes in the playpen while we finish, he hands me his bowl and points to the playpen. When I get up to clear off the table at supper time he knows dessert comes next, he stands in his playpen and begs to be put back in his high chair ... he continues to do this, even tho lately he won't even touch desserts/sweets. His tummy may not work, but there's nothing wrong with his little mind.
Last Thursday I got a call from the GI office ... the doctors schedule had changed and could I come in in an hour. The minds ticking .. 20 minute drive there ... find a sitter for Rebecca, drop her off ... oh, someone to pick Marietta up from school ... ah ... ya, if I had to I could. But they also had an opening the next morning ... phew ... I'll take that one ... at least I'll arrive with my head screwed on straight and be able to concentrate. Altho the pediatrician never said ... they must have put him on some sort of Emergency list to be able to get in already. The appointment itself did not determine anything but the most important outcome of this visit was that it was finally determined or agreed upon that he does not have a virus. We have always felt that this diagnosis was wrong and we are thankful that now others are in agreement and we can move forward.

Forward starts with blood work. They want to take a closer look at what his white cells are doing, which means he needs to go once a week for blood work, they will also monitor his liver a bit better this way. The other test we started with is a fecal fat collection test. We have to save all his poop for three days and bring it in for testing. So after his appointment on Friday I went right away to get his first blood work done. I received a call first thing Monday morning from the doctor. There are some subtle changes in his blood profile and he would like James to see a Hemotologist. They would like to look at his bone marrow in terms of whether he is producing enough white cells. This is not cancerous, with cancer one part of the blood takes over the other parts and doesn't allow them to produce, in this case they wonder if he simply is not producing enough. At this time they feel that he has some sort of rare disorder that effects his digestive system, it's a matter of determining what the disorder is. The GI hoped that I would be able to see Hemotology before my next appointment with him at the end of June.

Monday afternoon we seen the Pediatrician. We are so thankful for such a good thorough doctor, we really like her, she's really on the ball and she takes the time to listen!!! I think if we had had her our entire stay at the hospital things would have likely been done sooner. She seemed to really focus on James entire condition (eating, weight, inflammation, etc), whereas the 2nd doctor we got focused on the swelling and lymph nodes and didn't go further. The pediatrician told me that the GI doctor called her at home on Friday afternoon to discuss James. Although his condition is not life threatening (at this point) it is obvious that there is concern and good to see they are on the ball and not sitting around like before. Our pediatrician filled me in a bit more. The GI did not mentioned a biopsy, but she felt it was safe to warn me that there very likely would be one. The GI is sending us to Hemotology to determine exactly what they should do. They would like a biopsy of the bone marrow and are considering doing the liver at the same time since these two can be done during one procedure. She said it's possible this can be done yet before our holidays, but hard to say. I questioned whether they had a specific condition in mind at this point, but she said they were still in the process of narrowing it down. She did mention a few ... really long names ... but since they don't really know at this point ... I didn't really want to get into it too much. There is no point looking into and worrying about something until we know more, so I'll let them do their work and then I'll do my research.

The other thing accomplished from the appointment was to have his formula switched again. It hasn't actually been done yet, she wanted to look into it first and contact the GI dietician about what they would recommend. But once again, she's on the ball, she left a msg on my answering machine (but I wasn't home, b/c the van broke down and I was busy trying to figure out how to use the bus system ... much to the girls delight) an hour or so later about it and said she'd call me the next day to go over things. As well, she would like James to see a GI dietician. This would not be on as regular a basis as the current dietician, but it is in order to assist the current dietician. GI dieticians are a bit more specialized and once they have information on James my current dietician can contact the GI dietician for advise/help. And she said it would be fine to go on holidays, although there is some urgency to get things figured out, he has had this his entire life and three more weeks shouldn't matter ... so we pray.

I'm glad she had to call back the next day since we had a little episode that night and this way I could talk to her right away about it. When James was younger (not like he's old now) he would have it every now and then where he would wake up screaming. It's a specific cry which I dread hearing, more and more so now. When you get to him he's laying in bed but does not recognize you or acknowledge you. His eyes stare ahead and it's as if in another world. When you pick him up he's limp and just flops like a rag doll, then he may suddenly tense up and then flop again ... all-the-while screaming. We've had this happen several times, often it would happen a couple times in a couple weeks period and then not for several months, but each time it would last a little longer and each time I get a bit more scared. We always thought it was some sort of nightmare or night terror, altho it was scary he would always be fine afterwards and the next day it would be forgotten. This past month it's happen twice, but now we see that he's in pain afterwards. The first time after he came to again he would try sleep and would just be exhausted but suddenly would squirm and tense his legs and belly and cry, then ease and try sleep. This went on for an hour or so and then he finally slept. Monday night really scared me. Again he woke screaming, I got him out and was rather calm figuring I just had to wait it out and snuggle him and he'd be okay. But his eyes started to look like they were going to pop out of his head and then he started heaving and trying to vomit but wasn't able to actually spew it out so it just ran out the sides. All the while he's still screaming ... one minute/second limp, the next tense and hard to hold on to. It took a couple hours to get him back to a good sleep and then he woke the next day as if nothing happened.

I discussed this with the pediatrician. She mentioned also night terrors, but the last two episodes sounds more like seizures. There is not really anything we can do when they happen, but they will test and see if they can find anything. More blood work ... but at least it can be done with the other work he gets done. As well a urine test, which is easy enough. Once they get that they'll decide if he needs a EEG (stick the probes to the head to monitor abnormalities in the electrical activity of the brain). And of course, it's hard to say whether any of this is related to the rest of his issues.

So I think I sort of gave the run down of everything going on with our poor little guy. Oh, the milk and zinc tests that were done showed everyting to be normal. So, it would seem he doesn't have a full-fledge milk allergy, but since we've seen the difference in the diaper rash he probably has some sort of intolerance and it's best just to keep him off of milk formula (considering how much he drinks)... but he's allowed ice cream, pudding and all the yummy stuff again. If he reacts from having them we'll be able to tell how high that tolerance level is.