Sunday, March 27, 2011

Unhappy 3yr old + No Answers from Doctors= Frustrated Mommy

Ella has always been a slow grower, as I talked about in my post about my pregnancy with her last April  Her growth did not pick up after she was born.  At around 5 weeks old Ella was diagnosed with severe reflux and suspected MSPI (milk-soy protein intolerance).  She had a sigmoidoscopy done to check for inflammation in her tiny intestine and biopsies taken to check for allergy cells.  A few weeks later she was also diagnosed as Failure to Thrive.  Ella continued to gain weight poorly, even with my intense diet restrictions and doctor prescriptions. At 5 months old she had a feeding tube put in via her nose.  Learning to place her feeding tube was one of the hardest things I have ever had to do as a mother.  I had to wrap her tightly so that she couldn't move at all and then hold her tiny head still (and it was tiny, she was very small for a 5 month old baby) while she screamed and coughed and cried as I fed the long tube up through her nose and down into her stomach.  This had to be done a minimum of every 4 weeks (we had to switch sides) but sometimes it would have to be done more than once in a day!  Ella had her feeding tube in for 7 long months.  She didn't tolerate her tube feedings well so she had to be fed very very slowly, 1 ounce per hour 24 hours a day.  She was getting ultra high calorie Neocate formula, along with Reglan, Prilosec, Miralx & Mylanta daily as well as Benedryl, Tylenol, Ibuprofen, and pedia-lax as needed.  It consumed our lives but Ella slowly began to grow and at a year old she was feeding tube free and 18 pounds.  We slowly and carefully began introducing foods with the help of a nutritionist and speech pathologist (Ella had oral & texture aversions).  Ella continued to grow, albeit slowly, into the amazing little girl she is now.  At 2 years old we finally got to say goodbye to the Neocate formula and began trying to introduce milk and soy.  It seemed to go well and by 3 Ella was eating an unrestricted diet and off all her meds!  At her 3 year check up Ella had gotten to 26 pounds and although smaller than most 3 year olds seemed to be doing well.  Fast forward 8 months...Ella starts complaining about her stomach hurting.  At first I think its from having a sinus infections and that maybe the drainage is making her stomach upset.  After 3 courses of antibiotics (Ella doesn't respond well to antibiotics for some reason) the sinus infection was finally gone but Ella was still complaining about her stomach and it had become more frequent.  I thought maybe it was still hurting because of how long she was on antibiotics but I bring it up to her pediatrician in January when we go in to see if the sinus infection is truly gone.  Her pedi says to let her know if her stomach isn't feeling better in a few weeks.  On Valentines Day I call and they ask me to bring Ella back in.  I am getting worried because the stomach pain is now bothering her all day every day and even waking her at night.  She doesn't want to do things she likes doing because her stomach hurts to badly and even turns down her favorite special treats (Hershey's Chocolate and Vanilla Ice Cream) because of the pain.  Her pedi asks us all kinds of questions to try to figure out what is going on.  She feels Ella's tummy and talks to her about where it hurts.  She sends us for an x-ray to rule out constipation (which I am positive is not the issue, she has a bowel movement at least once everyday, often multiple times each day) and to see if she can see anything on the x-ray.  Ella also pees in a cup for them (and does an excellent job for a 3 year old!)  The x-ray shows nothing except a large amount of gas.  There is no stool just hanging out ruling out constipation.  Her urinalysis comes back normal so the pedi tells us to cut all dairy out of Ella's diet for 2 weeks and see how that goes.  2 1/2 weeks pass with no change in Ella's stomach pain and strict adherence to the diet so we head back in to the pediatricians.  This time they draw blood work and Ella pees in a cup for them again.  Before we leave I mention that I am concerned about what Ella weighed when the nurse weighed her that day.  I told the pedi that I was almost positive that Ella had been 26 pounds at her 3 year check up and is now weighing in between 24 and 25 pounds, depending on the day, on their scale.  Our pedi says she will check Ella's file and let me know what her weight was at her 3 year.  I felt kind of like she was brushing my concern off because she went on to tell me that its normal for them to only gain a couple pounds in a year.  I know this already and that is not what I was worried about, I am worried about zero gain or loss of 1 - 2 pounds in the last year!  Later that afternoon the nurse calls and says I was right, Ella was 26 pounds at her 3 year and the pedi is concerned about her lack of weight gain and wants me to make and appointment with Ella's old GI (gastroenterology) doctor.  I know it can take weeks to get in with them so I call that day and make an appointment for 2 weeks later on St. Patrick's day.  In the meantime Ella's blood work comes back normal (which is not unheard of in children this young even when they do have an autoimmune disease like Celiacs or Ulcerative Colitis...which my mom has) but Ella is still in pain.  I take Ella to a friend who is a chiropractor in hopes that it might help and we begin doing a Gluten free diet.  After I few days I think Ella seems to be feeling a little bit better and complaining a little less.  I'm not sure if its from the Chiro or the Gluten Free diet but I continue to do both.  On St. Patrick's day we head in to the GI clinic.   We answer what feels like all the same questions and go for another x-ray.  This time the GI sees some stool in Ella's intestine and decided she wants to have us do a colon cleanse to see if that helps with the stomach pain, she also says to start her back on Gluten immediately.  So that Saturday I pack Emma up and send her off with friends so Ella and I can do the cleanse.  I am expecting it to be horrible, the doctor had warned she would likely have awful diarrhea, cramping and maybe vomiting.  She could not have anything to eat or drink except clear liquids the day of the cleanse.  It went surprisingly well, Ella took both meds for me perfectly and had very little diarrhea and the actual clean out took very little time. Sunday we started her on Miralax again to make sure that she is consistently passing stool everyday (even though I had said she was already).  I call to check in on Monday and when I tell the nurse how the cleanse went the nurse tells me to start giving her 2 full doses of Miralax every day.  This is double the daily dose that you are supposed to take per day according to the directions on the bottle.  Since Ella has already been passing stool daily this, of course, gives her horrible diarrhea.  On Friday I call to check in again.  When I tell the nurse about the diarrhea she says to cut the dose to 1 1/2 doses per day.  Ella's diarrhea is still so bad that she has an accident while fully clothed (this hasnt happend to her since she was maybe 18 months old) because she just cant get to the bathroom in time, even though she has had diarrhea twice already before this bout.  That was today.  Ella is still complaining about her stomach and not sleeping well.  I am getting frustrated because I feel like the doctors are not listening to what I am saying to them and are just brushing me off.  I understand that the GI wanted to rule out constipation as part of the problem but its not the main issue.  It is not causing her to not gain/lose weight for an entire year!!! Thats not normal for a 3 year old, especially one who is already so small her weight is not even on the growth chart!  I need answers!  I need to figure out what is wrong with my little girl so that she is not in pain and is back to her normal happy self.  Its beyond frustrating to know something is wrong and feel like no one will help you make it better.  It feels like there is no urgency to finding out what the cause of the pain is for her doctors at all.  I am just feeling at a loss about what to do and how to make her feel better again and it just doesn't feel like we are getting the help/advice that we need! Eric and I are both beyond frustrated and its not all that often that we agree!

1 comment:

  1. Oh, so sorry! I think it's time for a switch to a provider that might be more open to listening!!!!!