Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Saturday, July 24, 2010
The effects from the starch intolerance led him to drink only half of his hemp milk, which was already low in nutrients (mainly carbohydrate source). He was just so sick, we knew it- we just didn't know what to do about it. We trust in our team we have put together for Samuel- his pediatrician, dietitian, allergist, and GI doctor; we brought him in for appts right away Monday morning. I knew he had lost weight, getting a weight at the pediatrician's office confirmed this- now down almost 8oz. since corn fail. He has had lots of periods of no gains, but this is the largest loss he has had. His little body has been struggling so much to catch back up since corn fail.
His pediatrician helped get him a last minute appt with his GI who agreed he needed to be admitted to the hospital to work on his nutrition as well as try and schedule a endoscopy for further evulation of his continued intolerances. She gave us instructions to come to the hospital for admission right away on Tuesday morning. I was still a little concerned to get to Tuesday morning. That night, little man's daddy slept with him, so he could be close in case something should happen...he was so lethargic. He was not dehydrated because he was drinking enough of his hemp milk to stay hydrated. Little man has always been so strong and so resilent through all of this, it was so hard to see him like this- so very, very weak.
Tuesday morning we were admitted to the hospital and the doctors began their assessments. He was given an IV and blood tests were taken to assess his current state. His blood sugar was very low (in the 40s)!! We were of course concerned, but not surprised as this would explain his weak/floppy that was getting worse with each day. His body had was going into acidosis, which meant that he was burning muscle to make glucose to feed his brain- not good. Little man was so, so sick; we were glad to finally be in a place to get him help. IV's were started and his blood sugar picked right back up to an acceptable level (90s); he began to perk up as well. He continued to eat just plain Hemp milk until he was made NPO in preparation for his procedure the next day. The GI doctors wanted to do his upper endscopy and lower sigmoidoscopy right away, so this was scheduled for Wednesday mid-morning. Little man was given a bowel prep of Miralax....only it didn't work. He was in SO much pain most of the night (only getting barely 3hrs of sleep all night long). We finally had to give him an enema to "clear him out", which worked nicely (finally). The procedure went well and multiple biopsy's were taken to help further evaluate Little Man's continued intolerances.
We kept him on hemp milk for the rest of that day, which he drank like a champ. It was then discussed and decided the next morning to re-introduce the Neocate to assure his brain gets the nutrition it needs (avoiding the low blood sugar). This is where it is very helpful to have kept logs on Little man's eating and symptoms. We had started to see significant improvements in little man when we had started to move away from Neocate. We seem to have found a thresh hold were we saw little symptoms when he kept his Neocate intake to less than 20oz./day. I had noticed that when he had 24oz., he would have random throwing up and discomfort. So, we decided this would be a safe place to go back to to get him thriving again. This was started on Thursday afternoon. He has been drinking it well and doing primarily well on it.
Test results are coming back in, biopsy's have revealed that his intestinal inflammation is not changed, and may be worse, than it was on last scope 5mo. ago- this after 7mo.on elemental nutrition. It doesn't make sense, unless you consider that he has been reacting to the trace proteins in Neocate as we suspect. The GI doctors agree that it doesn't make sense, but we differ on the why. They ordered more tests to be done, testing for an auto-immune enteritis. Good news is if they find this, it can be treated with steroids to get the inflammation to finally subside and we can begin to introduce foods. The bad news, this is an auto-immune disorder - from infancy.
This is the course of FPIES, ruling out other possibility's while you treat the intolerances. It is a difficult road.
Little Man will stay in the hospital for the weekend, and Monday will bring more decisions and next steps to take.
As for the rest of the family- we are holding on. The 3 older boys are doing well, they understand that their little brother is sick and needs the extra care right now. We try to keep their routine as "normal" as we can so one of us stays home with them while one of us is at the hosptial; with the exception of when we have help to come stay with us. This week, that came in the form of my sister. The boys always enjoy visits from their Aunt, she knows their routine and their needs and that gives them much comfort and stability in an unknown circumstances.
We remain thankful for the continued support from family and friends....it gives us much comfort to have prayers for Sam's health and our strength for endurance being sent our way. We have a deep Faith that allows us to put our worries in God's hands.