So, Tomorrow, I have an appointment for Cole to yet again rehash his constant issues with constipation. This has been going on for a VERY long time. since he was a little baby. a few months old...Little. I have gone to the doctors repeatedly and at 15 Months old a doctor he saw gave him Miralax after I made him an appointment because he SCREAMED for 20 minutes while trying to go #2. He is now 3.5 so that is almost 2 years since the first time they would do anything about it. WHY is it so hard for these doctors to recognize that there is actually SOMETHING wrong and I'm not just blowing smoke up their butts. I am sorry. Yes, I do worry about my Children and their health, but why would I make repeated appointments for the same thing if it was NOTHING?!
The last Practitioner that saw him agreed that there was something wrong and that there is an underlying issue. His diet is pretty okay. he drinks PLENTY of fluids and loves fruits and Veggies and he loves peanut butter, eggs and bread. we try not to give him a lot of sweets but we have been trying to potty train him since last year. and rewarding him with a sugar treat is what motivates him to go. So they wanted me to do a Miralax Flush on him. which is basically you mix 48 Oz of water with 8 Capfuls of Miralax and either he has to drink 4oz every 15 minutes or drink it through the day until he finishes it at night. he "SHOULD" pass whatever is blocking him. Not. I've done the flush 2.5 times. and he is still just as blocked as before.
I am extremely nervous for the appointment tomorrow. because the next "step" to clean him out is not pretty. and I am nervous because no one believes me when I tell them there is something going on with my son and because I know as long as he is stopped up the Peds Gastroenterologist will not see him. and what's discouraging? yeah we may be able to get him in after he's cleaned out and get him screened by the GE nurse but what about by the time the peds GE doctor actually GETS here? which is anywhere from 2-3 months before he visits again and we might be into another episode.
I am also tired. Tired because no doctor has taken me seriously. Tired because I feel horrible for What Cole has to go through and Tired because there is nothing I can really do to help him get relief until the Dr's do something about it. because I have tried EVERYTHING available to me without prescription (with the exception of an Enema) and NOTHING has worked.. I am Just Tired.
I am also tired because I am going through yet another Battle with Lincoln and his foot problems. he has what is called a supinated foot. but the physical therapist thinks the problem stems from inwardly rotated hips and she thinks his tibia is shorter than his right Tibia. and so she will not go on with further treatment until an orthopedist can look at him. and then his referral to the orthopedist mentioned NOTHING of his hips. so maybe I can just TALK to the doctor about it. I've been dealing with THIS issue since LJ was 16 months old, too. I don't know if I just have something on my head that says "don't take her seriously, she's crazy" but I'm starting to think I do. but, not anymore, I am going to DEFINITELY start putting my foot down.
Sorry this seems Jumbled. that's how my life is at the moment. so many things are going on. and I really haven't had the chance to organize everything going on. hence, the long absence from writing and keeping people updated. I do have lots of pictures to post and things like that. just haven't really felt up to posting.
Wednesday, June 23, 2010
I think I need to vent.
Posted by Lesslie at 1:25 PM
Labels: Cole, Lincoln, Weird Mood
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3 comments:
That SUCKS, Lesslie. I am so sorry to hear all the doctor troubles you are having. I wish you had my pediatrician because he is awesome. When Andrew was having issues with banging his head on surfaces(including concrete!) she referred us to a pediatric specialist who helped us correct the problem.
I wish I could pass some of Andrew's bowel habits on to Cole because he's the opposite. I can't imagine how much that must hurt for Cole. Poor buddy. It definitely sounds like there needs to be more research done so they can get to the core of the problem. Andrew does eat tons and tons and tons of fruit so I'm thinking that's why his stools are so mushy sometimes. He also only drinks water (nothing else -- doesn't like milk and we don't buy juice). Sorry that's gross but we are talking bowel movements here, so hope that's okay!
I wish He saw someone Consistent. unfortunately, because he has to be seen at an MTF, he never sees the same doctor and when he does get a doctor he's had before they don't remember him so I have to rehash everything all over again. I wish he could go to the Peds clinic right here in town but Tri-care has to be difficult.
It is extremely sad to watch as I'm sure it's terrible for him to experience it. I know he's ready to toilet train, yet, he's afraid because along with the constipation problems, he has encopresis, which basically when he passes gas or whatever, he leaks stool and he doesn't realize it until after he's already accidentally soiled a diaper. so until I get his constipation issues under control and the Encopresis Stops, I can pretty much assume he's going to be in pull ups until then.
I honestly think that he has some disorder of the Colon, the thing that I've found that most resembles what he has had to deal with is Hirchsprungs disease, which means that the Ganglion Nerves in the Colon never developed fully so he doesn't have anything after a certain way down through his intestines/colon that enables production of the bowel movement. and why I think that's what it could be, is because this has been going on since infancy and this disease can start as early as Birth for some infants, starting with being unable to pass mirconium.
unfortunately, the problem with Constipation in Children is that it's often taken as JUST something that's temporary, so when you go in and you speak to different doctors, they tell you the same thing because they treat it as a common occurence. when sometimes, you get the kids who actually have something WRONG and people have been milling around with a thumb in their butt and then at the last minute are trying to fix it and make up for the time that the children have been without proper treatment. that is basically where Cole is at. Their main Focus right now, is getting him unblocked.
See Cole has a fairly good appetite. he loves fruit and Veggies. maybe I should push more fruit. but he is allowed to eat as much fruit as he wants. the things that used to work for him don't anymore and so I'm kind of at a stand still. and I really think he's built up some kind of Tolerance to Miralax because it doesn't even seem to have any effect on him anymore.
we have been pushing more water or watered down juice to Cole and Less milk because some parts of me wonders if this is a milk allergy, which is easier said than done, because Milk is in Almost everything.
Nope, Not gross. Nothing grosses me out anymore especially after one of the diapers I had to change during one of Cole's Miralax Flushes.
Sorry this is so long!
Ugh, yeah, he should definitely be seeing the same doctor. I don't doubt that you are more knowledgeable on his condition than the docs, who are treating it like ordinary constipation. I really hope you get answers soon; I can't imagine how frustrating it is for both of you!
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