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This is just copied from the blog I started a few days ago. This is just today and yesterday.
First the good news.
Danny went into the pediatrician today to have his chart flagged for his immune complications because of the various things that have to happen when he is sick. While we were there the pediatrician looked over the few records he had printed, before the system went down, and just with those few said he wanted to refer him to a hematologist. He wanted to ask another pediatrician that was working this morning because he used to work in the hematology departement at children's. Even that doctor said he needs to be followed by a hematologist and not just the GI. They only had two visits from the GI and didn't even get the records from the actual blood counts. They only had references to them. They said anytime blood counts change either in a cyclic manner or if they are constantly low or high they need to be followed by a hematologist...not another specialist that orders a vial of blood once per month. He is also going to have the referral for Cincinnati Children's put through that office!!! I was so excited that I forgot to ask a few questions. I will be calling back shortly to ask those questions. I am so glad that we are finally seeing a break in all this ridiculous red tape.
Now the not so good news...
We went to feeding therapy yesterday, but they didnt' find anything that would even warrant us coming back. We need to initiate a night time snack...just before bed...so that if he refuses dinner he will have a scheduled snack to give him a chance to eat rather than just being allowed to eat if he feels like it later. This is to discourage any behavioral feeding issues he may be starting. We also have to keep a food diary for three days and send it in to his nutritionist at children's to have her calculate how many calories he is getting now. We will also keep one indefinitely after that until we can 100% rule out the feeding tube. He still isn't really eating much but will have a spurt of eating and then stop for almost an entire day. Lunch he will usually eat more than the other meals (but still not enough). He has refused breakfast since 3/20 and hasn't eaten much at dinner since then as well. Lunches have been slowly getting larger and larger since this past Monday (with the exception of his eating explosion on Tuesday). So basically we still have no idea why he isn't eating... I will keep offering food and recording how much of it he eats. Hopefully we will get out of the g-tube possibility zone soon.
This part is from a few days ago...
I am truly grateful that he is still eating something but Danny has cut back on how much he is eating again. He refused breakfast...again...and only ate about 1/2 of what he normally would for lunch. Yesterday he didn't eat breakfast but at least he ate most of his lunch and a HUGE dinner. Today he refused dinner at all for about 2 hours then he finally ate a tortilla. His reasoning...and I quote, "Mommy, I want a soft shell because I don't want a pipe in my tummy." He has changed the "tube" to a "pipe." I smirked but didn't laugh because he is scared of the "pipe" even though I showed him a friend's picture with her tube. We are still going to the feeding therapist tomorrow from 12:30 until around 2 pm and hopefully it will be a one visit gives the answer type thing. I am willing for either a "this muscle isn't working well and thus he gets tired quickly while eating" or "this is behavioral and he should be back to normal soon." If I get either of those answers I will be happy. At least we would have a reason for the sudden plummet in his food intake. He also has a well check at the pediatrician Friday morning so that we can have his chart "flagged" so that anytime Danny comes in the doctor will see the note. Our pediatrician has electronic records so if it isn't on top, it doesn't get read unless you mention it. Due to the blood count fluctuations, any time Danny comes down with any type of illness he has to get a CBC (complete blood count). If he has a fever over 101 he goes in ASAP to get one and if he is sick for 4+ days with no identified cause he has to have a blood culture and a urine culture to rule out sepsis. Sepsis is where the blood or urine is infected and is extremely dangerous. Due to his immune system not working right even when the blood cell counts are normal he can develop odd conditions quickly and they need to be treated quickly.
Nope...no daily testing other than a food log. The ped has done a urine specimin twice and looked at it under a microscope to make sure everything looked right because Danny kept saying his male parts hurt. Apparently this is the age that the nerves get sensation and sometimes kids will get hypersensitive for a while. They are making sure that he urinates at least once every 8 hours but thatis about it. He is taking gatorade to keep his electrolytes balanced but he isn't eating much. I found a site called myfitnesspal.com that you can put in the amount of the specific food (down to the brand and type) and it will put in the nutrition info for what he ate. Friday is when we started this. On Friday he ate 610ish calories with me bribing him and such to eat. Saturday he did much better and ate almost 1100 calories I think. Yesterday he was back down to 645ish. :/ He has NEVER had eating issues. He always ate more than he has ever needed but never had it stick the way it should. He has never eaten this little....
Well I hope he is alright but if it makes you feel any better that is how my son usually eats...Great one day an not so great the next few ....he is not willing to eat anything ? even if you offered snacks an things he loves ? My son will tell me he is full but then ask for dessert an even when I say you have to eat more or you can't have it he chooses to go with out... If he is only eating a little just try to make it as fattening as you can. We tried the periactin stuff but it didnt work for us i hope it will for you . It does sound like maybe he is coming down with a virus an no kid eats well when they don't feel good . Hope he perks up soon.
He has been slowly getting back up to 600 calories regularly. This was an all of a sudden type thing. He has NEVER done this before. He initially refused everything ofr 2 days. Since then he had been eating a little bit nore each day until a few days ago. That 1000 calorie day was the most he had eaten since March 20th. His CBC was fine for lymphocytes (the ones that fight viruses) but his neutrophils (the ones that fight bacteria) were low. He has cyclic low neutrophil counts but they weren't even really all that low. His have been down to 1000 on a CBC but even then they never mentioned it to me. He was 2 years old when that one was taken but I don't remember what was going on then. He ate...I can tell you that much. The drastic drop in energy level is what has gotten to me. It isn't a virus...that much we know. We just don't know what it IS...