December 15, 2009
It's no secret that Ive been concerned about Dylan's potty training ability. Along with this rare disorder causing tons of enterocolitis episodes it also affects kids daily even as they get to be bigger toddlers and grow into big kids. Like Dylan, alot of kids have issues with loose stool. This becomes a problem when potty training because the bowels are over active and loose, which is hard to control.
I haven't been in a hurry to toilet train Dylan just because he's had such a rough time with everything else and has some anxiety issues when you try to force him to do anything. We started introducing the idea of using the potty a few months ago and Dylan would scream at the sight of the toilet, he wanted nothing to do with it, and he sure didn't want to sit on it.
Well recently Dylan has started to make a routine in the bathroom, he now thinks its funny to go sit on the toilet and make farting noises. Its rather cute, and I must say I cracked up the first time I saw him do this. Although he does want to leave his diaper on, at least he's showing that he does have a little interest and does know what to do.
As of right now, Im taking this step in really introducing and trying the potty training but approaching it with little expectations so I can give him time to really succeed at it when he's ready. Dylan has started taking his own diapers off when he is just running around, so Im using these moments to run him to the bathroom and sit him on the toilet while he is indeed diaperless. I also introduced big boy underwear, my only problem with that is, whether its diapers or underwear Dylan doesn't want to pull them down before sitting on the potty. So it's going to take some more time, but we are slowly turning the corner, and of course we are taking things as they come one day at a time. Slow and steady wins the race, and we will cross that finish line when Dylan is ready.
October 20, 2009
October 14, 2009
My last post was about Dylan being sick again. After being sick with watery diareaha and vomitting for 6 days and not eating and barely drinking and not getting any help from pediatricians at home we decided to make the trip to Cincinnati to see Dr. Levitt. He had told me in an email to do rectal irrigations 3x a day, but Dylan just kept getting worse so of course I was scared and wanted Dr. Levitt to see him. Dylan was feeling a little bit better when we got there, we saw Dr. Levitt and he diagnosed enterocolitis (an inflamation of the intestines)admitted him so the nurses could continue the irrigations and the plan was to do IV fluids and antibiotics. Things worked out fine and we even lucked in to avoiding the iv. We came home and Dylan did a complete turn around....
This goes to show you that with Hirschsprungs children, a surgery isnt the absolute fix, children still go on to suffer and always will have a life time risk of getting enterocolits which can be dangerous if left untreated. We have always taken our journey with Hirschsprungs one day at a time, thats all you can do. It is a struggle that you just pray doesnt keep getting worse and hopefully gets better and pray to see that light at the end of the tunnel.
September 29, 2009
Dylan has been sick since Sunday, he wouldnt eat or drink anything Sunday. Was throwing up a few times, and then as usual he had the foul smelling watery diareaha. Yesterday I made the choie to take him to the pediatrician just to have him checked out. We have been through 2 pediatricians already. The first one we changed because they told me Dylans blood work was fine and i later found out that it was abnormal and he showed signs of infection in his blood so I took him to his surgeon and he was hospitalized immediately. The one that he sees now, is SUPPOSE to be a gastroenteroligist, and specializes in the digestive system. He has never been a help to us, and yesterday i really didnt expect any different but wanted to take Dylan to be checked out. Instead we ended up seeing his wife who is a dr as well, and she did nothing but make me feel like a horrible parent and that i wasnt doing my job to help Dylan stay healty. She stopped short of nothing but calling me a bad mother, Dylan has always had anxiety issues with dr offices and hospitals. Thats to be expected with everything he went through last year. She looked over the current symptoms Dylan was having and then explained to me what i already knew which was that the bad bacteria was over taking the good bacteria in his intestines. Then she abandoned the situation, flipped through Dylans chart, and says "He has anxiety and ODD that you are not getting him treatment for?" "WHAT" is all I could think of. I guess he didnt like the fact that she couldnt talk over Dylans crying so loud so she decided I was a bad parent because he cries when he comes in to a dr office. So after the "not getting him treatment" remark I say "they offer therapy for 3 year olds that have dr office and hospital anxiety?" then she realized she opened her mouth before she really knew what the issues were. She said that no they dont but if affect his every day life and hes scared of everything and cant sleep then yes he would need some type of treatment. I then explained to her that he only does this when he comes in to a dr office or hospital and that he is just traumatized because every time he goes to a dr or hospital a dr is putting something in his bottom, and could she not see why he would be fearful. I think then she got the point but then she went on to putting me down for not bringing him in for physicals and well check ups, not looking at the fact that we are there every few months because hes sick and we leave there empty handed with no prescriptions or no help. SO needless to say I am soooooo done with these doctors and I will be finding another pediatrician this week. One that can understand what my child has been through and have compassion and understand that hes been through alot and he is going to cry when he comes into a dr office because he is scared. I have said many times that I wish surgeons could be your childs pediatrician too, they show so much more concern and sympathy and understanding toward a child. Its sad to see that the medical professionals that choose pediatric medicine for their career really do not care about the child or helping. The only thing a pediatrician is really concerned with is well check ups, the dont worry about anything that they are not specialized in treating. Its really disappointing that I have lost faith in pediatricians in general...they have let Dylan down too many times, the only one I turn to now is his surgeon, who I have realized is the only one that has truly showed Dylan sympathy, compassion and understands what he has been through.
Today Dylan is still the same, not as much diareaha though but its becoming a battle to get him to drink which he really needs right now because he looks horribly weak and skinny. After a few days of this my boy looks heartbreaking and I would do anything to see him healthy and happy again....
September 27, 2009
August 28, 2009
OK, so at our last clinic visit with Dr. Levitt, he wanted us to try the pectin, also immodium, and begin with potty training before he sees us again in October. I just emailed the nurse today to go ahead and schedule the appointment and this will be October 9th. We havent yet started potty training and I am a little aprehensive about it....Dylan doesnt really show any interest, and this child has been afraid of everything since going through all the medical issues and hospitalizations last year. He seems to get nervous when he sees certain things, kind of like he has a phobia of anything that reminds him of being in the hospital or even having irrigations or rectal exams done. The poor little guy doesnt like dr offices and screams at well check ups with his pediatrician fromt he time we walk through the door until we leave, he also doesnt even like McDonalds, Im guessing the glass doors remind him of going into a dr office so he puts up a fight when going in. I guess this could be a little bit of post tramatic stress.
So, we will be heading back to Cincinnati to see Dr. Levitt in exactly 6 weeks, so this will give me a little bit of time to introduce the potty training at a more serious attempt before we go back...wish us luck!
August 26, 2009
Toilet Training for Patients Previously Treated With a Bowel Management Program
Children with fecal incontinence, meaning they are unable to control their bowels, can be treated with a bowel management program that uses daily enemas to keep their colon quiet and clean 95% of the time. Anorectal malformations are defects of the anus, the opening at the end of digestive tract where stool exits the body, and the rectum, the final section of the large bowel leading to the anus.
When a patient reaches 3 years of age and is still incontinent and the parents are considering sending the child to school, we talk to the parents about the necessity of implementing a bowel management program to keep the child's bowel clean. This will allow the child to go to school with normal underwear and nobody at school that does not have to know should be aware of the child's problem.
Parents frequently ask the question, "Is this treatment for life?" The answer is, not necessarily. Some of those patients were born with anorectal malformations with a very bad prognosis or chance of gaining control of their bowels and most likely they will continue with the bowel management for many years. Other patients may have partial fecal incontinence, anatomical features such as well constructed sacrum (the lower part of the spine that forms part of the pelvis), and other factors that may indicate these patients could achieve bowel control in the future. For these individuals, bowel control trials should be conducted periodically.
Each year during summer vacations, when the child is not attending school, we can conduct a trial with laxatives. For this, we stop the enemas and see how much bowel control the child has. Within one or two weeks, the parents would be able to determine whether or not the patient is ready to continue without enemas.
Parents should learn about the specific type of malformation that their child was born with, since each defect has a different prognosis. This knowledge will enable parents to have realistic expectations about whether their child may achieve bowel control.
Basic Principles of Bowel Control Trial
A bowel control trial is carried out at home for a period of one or two weeks and must follow certain basic principles and procedures.
Talk to your child about the trial and make sure your child understands the trial's purpose and the general process.
Explain that during the trial, the child must avoid social gathering because of the risk of having unexpected embarrassing bowel movements.
Motivate your child to keep a clean colon. Establish some incentive, such as buying new underwear, and provide rewards for every day "clean day."
Stop the enemas.
Give three meals per day with no snacks. The purpose of this is to try to condition the colon to empty periodically at the same time. It is much easier to toilet train a child that has one, or even two or three bowel movements every day at predictable times, than a child that has very irregular bouts of diarrhea and constipation. Regularity is very important, but not always possible to achieve because of the difficulty in regulating colonic motility (the movement of food through the digestive tract).
Try to include the same type of food in every meal. The type of food largely depends on whether the child has been classified as belonging to the constipated group or the diarrhea group. Most patients with anorectal malformations suffer from constipation and therefore need a laxative type of food. Most parents know what type of food has a laxative effect in their children, but if you need help determining types of foods that are laxative or constipating, call the Colorectal Center at Cincinnati Children's Hospital Medical Center.
Make sure the child stays close to the bathroom.
Laxatives Are Often Needed
Because most of these children suffer from constipation, they commonly need some form of laxative to have bowel movements without enemas. The type and amount of laxative that a specific patient needs must be determined on an individual basis by trial and error. Most children with anorectal malformations do not respond to the usual recommended dosage of laxative. In determining how much laxative your child needs, try to remember if your child previously took laxatives and if so, how the child responded.
The laxative must be given once a day (not three times per day) in order to try, again, to provoke one or two bowel movements per day. Start by giving 1 teaspoon of a determined laxative at night. Keep in mind the effect can be expected the day after the laxative was administered. If the entire day goes by without the child having a bowel movement, that means that that not enough laxative was given and the amount should be doubled that night. It also means that the child needs an enema to remove the stool that has been there for 24 hours in order to avoid fecal impaction.
If the child does not have bowel movement the following day, the amount of laxative should be increased further and you should continue that way every day, while also giving enemas to avoid impaction. If the child suddenly develops diarrhea, that means that the amount of laxative given the day before was excessive and therefore should be reduced, but not eliminated completely. What we are describing here is a process of trial and error to try to find the right amount of laxative—the dose that provokes bowel movements but not diarrhea.
Most of the time we suggest parents also administer some form of fiber product in addition to the laxative. The fiber will provide bulk in the stool so the child can have formed stool rather than liquid stool. If the child's stools are too liquid, increase the amount of fiber and decrease the amount of laxative. Conversely, if the child has formed stool, but can't have bowel movements easily, increase the amount of laxative.
Sometimes the child is having bowel movements in the toilet, but the parents are not sure whether the bowels are being completely emptied. Under those circumstances, we recommend getting an X-ray film of the abdomen so we can see how well the child is emptying the colon. To promote complete emptying of the colon, the child is asked to sit on the toilet or potty three times per day, particularly after breakfast, lunch and dinner, or at another time the parents think the child is most likely to have a bowel movement. Sometimes suppositories can be used to provoke and help regulate the bowel movements.
Using Results To Determine Future Course of Action
With this trial and error approach, within a week or two, parents should be able to determine the type and amount of laxative their child needs, how much bowel control the child has, and whether or not the child is able to maintain a clean colon. If the test shows the child actually has bowel control, that means the child does not need any more enemas but must continue with the same bowel management program. If the test shows that the child has some bowel control, with occasional voluntary bowel movements, but still soils significantly, the child may need to go back to being treated with enemas. If the child is still soiling significantly, our recommendation is to go back to the bowel management for another year, and not to take unnecessary risks of embarrassing accidents at school.
Every summer, when the child is not attending school, the parents may try again. Every year, they will be dealing with an older patient, more interested in becoming fecally continent, and therefore, with more possibilities of success
*High fiber diet
*Probiotics (see link on the left)
Dylans doctor has also recommended that we try immodium in hopes of slowing down his motility. We have not yet tried this. High fiber diets seem to have the opposite affect on Dylan as well, instead of thickening up the stool he gets worse diareaha. We have yet to try the probiotics but that is something I have been doing some research on, my concern is finding one that I can crush and mix with food or a drink. I did purchase a cheap brand at the local drug store and realized after I got home that the box said "do not crush". Benefiber is suppose to help regulate the bowels. Alot of people use this when they are irregular. Its most commonly used for constipation but was recommended to us because its suppose to regulate bowel movements, it is basically an extra source of fiber. We recently tried pectin, fruit pectin is used to make jar jams thicken up. There are flavored kinds with sugar added and flavorless with no sugar, but a fair warning this stuff is bitter which is why we had no success, and it also thickened up Dylans drink no sooner than i mixed it...it was the consistancy of pudding which of course would be hard to convince a child to drink. As we try more things I will report back with the results, as of now we are leaning more toward trying the probiotics because alot of parents with HD children or children with bowel problems in general use these and say it makes a world of difference.
Good luck to the rest of the parents out there sharing our same journey, it takes patience and understanding and a whole lot of failed experiments with different stuff, but sooner or later we will figure this out!
July 29, 2009
June 8, 2009
May 8, 2009
I appreciate all the comments, and am available by email to any of you who would want to contact me for information or questions. You can reach me at firstname.lastname@example.org
Alicia, we havent had much success with the pectin yet. We tried the powder and the type we bought was bitter and made anything we mixed it with thicker so we have quit with that for now. I plan on trying the other types as soon as I can and will let you know how that goes. I also know that alot of other parents use probiotics too, you can purchase them in pill form and also things like yogurt has natural probiotics in them.....
Again thanks...feel free to contact me or make any other additional post or questions....thanks for reading our story!
April 20, 2009
March 27, 2009
March 12, 2009
Dylan has been sick twice since his surgery in January. The most recent episode is going on now, and I have felt the need to vent which is the reason for my post today. This last surgery was a procedure to fix Dylans problems but yet we are faced with the same type of symptoms and problems we had before, so of course I ask myself...WHY did I put him through the awful experience of the surgery and the pain he indured afterwards if things were gonna end up being the same. Dont get me wrong, he is doing ok, but he gets so sick with stomach bug symptoms so often and it is really hard to watch him suffer with this. Last night he just cried and cried because he was in so much pain, and then after vomitting he finally quit crying and went to sleep. His bowel movements when he is sick like this literally stinks up the whole house, which is probably the bug or virus itself causing it to stink so bad. I just wonder if theres more behind all the stomach bugs, none of the rest of us get sick when he does this either, and most stomach bugs are contageous. Dylan having problems since birth with his intestines does make him more vulnerable to stomach bugs, and he has had more than a dozen in the past year.
With the help of God, I pray things get better as he gets older. All I can do is hope for the best and pray as much as I can.....There is a reason for everything but I will never understand why we have to see children suffer.....
March 11, 2009
February 21, 2009
Dylan went for a check up Feb. 17th with his original surgeon Dr. Beals. We had been scheduled to go back to Cincinnati to see Dr. Levitt but had to cancel due to the weather being bad so we went ahead and made an appt with Dr. Beals for a check up, he was there during the whole procedure and knew exactly what happen and was perfectly capable of treating us for a post op appt.
Everything went well, Dylan seems to be recovering fine. Dr. Beals told us Dylan only has a third of his colon left but that there is enough left that he doesnt think Dylan will have anymore problems. After the appt Dr. Beals wanted us to take Dylan to get an x-ray, which is what Dr. Levitt wanted us to do when we came to him. We still havent heard the results from it but Im sure no news is good news.
With all that Dylan has been through, meaning all 4 surgeries, we know that its gonna take time before Dylans bowel pattern is normal and he probably wont potty train like other kids, but we can only take it one day at a time and pray for the best. Dylan has also already had a stomach virus which he seems to get rather easily, and alot more frequently than normal kids. As for now, we are just hanging in there yet again and hoping everything soon returns to normal and hoping we dont have to deal with enterocolits, which is a type of infection kids can pick up after a pull-thru surgery. Dylan had "EC" once after his second surgery and was hospitalized and given iv anitbiotics for 5 days, so we are praying to avoid this, this time around.
Thanks to all of you that stop by to read and keep up with Dylans updates. I will post again if we go for another check up. We are hoping to take Dylan back to see Dr. Levitt in the next month or so, to see if he is well enough that we can stop the daily irrigations.
January 28, 2009
Recovery at home has went wonderful, he has done so well. The only problems he has had is losing some weight and a nasty rash on his butt, which is expected for any child after a bowel resection. Right now we are taking things one step at a time, and hoping Dylan is on his way to living a normal and healthy life since having this medical problem taken care of. We are hoping the struggling is over and that we can close this chapter with Dylans Hirschsprungs journey and some day look back at the experience as memories. He is truly an inspiration to me, he has been through so much and still smiles and laughs all day, his struggles seem to have affected him in a positive way I think. Just hoping and praying that everything continues to go well after this.