Let's Back it Up, Way Up
I honestly can't even remember what was happening one year ago with Abby... so I'll go back to what I can remember, which is around December 2014. Abby was starting to do much better with her feeds, but she continued to have some gagging and would spit out her food here and there - but she was doing so well that we didn't need to do much therapy work with her. We started to talk about weaning from the Feeding Clinic, but knew that with baby #2 coming in January we needed to wait just incase Abby happened to regress in her eating with the new addition.
Baby came, Abby did well, we gave it 3 months, and in the middle of March we graduated Abby from the program! YAY! We are really proud of all the hard work and progress Abby has made, and all the hours that the Clinic poured into her case. We've made some life long friends along the way!
At around the same time we ended therapy, Abby's Gastroenterologist also suggested we should start to wean Abby off of her reflux medication (prevacid) which we were giving twice a day (15mg each) - so we went to one pill a day for a few weeks, then we went to none - whoo hooo!
Or so we thought.......
April 2015 - Abby's Spiral Downward
We completely stopped prevacid on March 13th, 2015. On the night of March 13th, Abby broke out in hives all over her body - massive ones. They lasted a few weeks - we took her in and the doctor just said "oh looks like she has seasonal allergies, put her on this med". In my heart of hearts I did not believe that Abby all the sudden had seasonal allergies, so I never fulfilled the prescription. Then, two weeks later, Abby started to not want to eat, she would not open her mouth, or if she did she would hold the food in her cheek and not chew or swallow. 3 ozs of food took 2 hours (no lie) to feed her....my husband and I were beside ourselves. What happened!? [On a side note, this blog isn't about baby #2.. yet.. but let me tell you that since she was 2 weeks old she started to present just like Abby as a baby - she too wanted NOTHING to do with eating! ARE YOU KIDDING ME!?!?!? So in the midst of going through everything with Abby, we were also struggling to keep our second child growing and thriving, but more about that on another post...maybe.]
Then Abby started to gag, a whole lot. And then came the vomiting - she started to throw up some of her meals, some an hour after she had eaten it. What in the world. Then Abby's belly got huge, swollen and hard, and a rotten sulfur smell was reeking out of her nose and mouth. Her eyes and nose were also running like a faucet. Our pediatrician couldn't see us, so we took her to a pediatric urgent care. The doctor said, hmm sounds like a "reflux flare up", let's put her on Zofran to take away her nausea and start her back on her reflux med. So that we did. The first day on Zofran she started to eat more - but that was short lived. Back came the vomiting, gagging, extremely unhappy cranky little girl. She would start screaming for no reason.
We took her to a new Gastroenterologist as we moved out of the area we used to be in, and she said this was all due to Abby being extremely constipated. Ok... so on to enemas and laxatives she goes - we do a clean out. She gets a little better, again short lived. Took her back and doctor said she needs another clean out - so another clean out we do.
Then one night, after a day of vomiting, not wanting to eat and just being in an all out awful mood...lots of crying..Abby started complaining that her back hurt...screaming and screaming holding her back. I took her to the ER and they said "she's fine, little kids just like to say things hurt when they don't really hurt" - they didn't run one test. Unhappy mama here. I got into her GI doctor the next day, and she ran a slew of tests and also said she was backed up again. Poor baby.
All this constipation... which has been a chronic problem for Abby..had the doctor wondering if there was a deeper issue going on. The GI did a reflex test on Abby and noticed she had low tone in her low extremities and not great muscle/tone in her "expelling unit" - so she said we needed to get an MRI done to see if Abby possibly had a tethered cord in her spine. Since she would have to be put to sleep for the procedure we decided to do another endoscopy at the same time. Both tests were performed in May and thankfully both came back pretty much normal!! Praise God!!!! They did note that her sphincter muscle was a bit loose, but other than that the MRI and Endoscopy came back clear.
Unfortunately the still not wanting to eat, the big belly, the watery eyes and runny nose continued, we went out on a whim and took Abby off of all dairy....3 days later, Abby was a new woman, everything got better! She even asked for food and said she was hungry, those were words we had never heard before. From what we can gather, it seems like the Prevacid may have been masking the dairy allergy symptoms, and when we stopped the medicine, her body went haywire. We were referred to an allergist, and got a whole panel of allergy testing done. Testing wise, all the tests came back normal for allergies, but apparently the way that Abby's body responds to the known allergen, like dairy, isn't a response that shows up on tests - well that's no help!! We also finally came to a diagnosis on Abby's crazy allergic episodes to peas and lentils that started as an infant... she has FPIES (food protein induced enterocolitis syndrome). This is a rare syndrome - read up on it if you're interested!
Unfortunately, these amazing steps forward after removing dairy started to come to another halt a few weeks later....
July - August 2015
Slowly Abby started taking longer and longer to eat...we'd get a bite in and it would just stay there and we could not get her to chew or swallow. Each bite would take 5-10 minutes. I would say maybe over the course of 6-8 weeks things just got worse and worse. I would show you a video of what was going on , but it is literally heart breaking and I am hesitant to make that video public. It was bad. On top of everything, Abby was losing weight. At her peak she was 26 lbs... she is now down to 23 lbs at 3 years old, and she hasn't been able to gain anything since around March. The doctors are concerned again. Sigh. She is back off of the charts...
We tried an appetite stimulant, Periactin for 3 weeks... it didn't work and gave Abby awful insomnia. There is another medicine we can try, Megace, but it is a hormone therapy drug used for adults with breast cancer and AIDs.. and I just can't feel right giving that to my 3 year old daughter. So we continue to decline it.
Where we are now...
Things have gotten so bad that meals were taking up to 3 hours to finish one slice of pizza (sans the cheese!)... 1.5 hours to finish 1 scrambled egg... you get the point. It was not good. And Lord forgive us, but we became extremely upset and this just made matters worse. We got back in contact with the clinic and let them know what was going on and they said we absolutely needed to stop what we were doing, change our attitudes, change everything if we wanted to get this fixed. We knew something had to change but we were SO concerned about Abby getting her calories that we did whatever it took to make sure she ate....and we created a big problem.
Just this past week we met with the GI who was also in communication with the Clinic .... Dr. Jeiven is great if you are in the Tri-Valley area - she goes above and beyond... anyway, we met with her this Monday and were given the go ahead to take the drastic measures to change everything like Dr. Patel (Director of the Clinic) had suggested. So we now set a timer and after 20 minutes, Abby is done, regardless of what she has or has not eaten. We give no verbal prompts to take a bite, chew, or swallow. We moved her to a new location to eat. We bought new plates. We bought stuff she can set the table with. And we do whatever we can to make meal times happy times. Today was our 3rd full day of these changes, and meals are so much less stressful...but she definitely only gets in a few bites each meal. I just don't understand how a child doesn't want to eat... Dr. Jeiven will see her in a few weeks and if her weight really nose dives then we will have to talk about the inevitable - a feeding tube.
God is in control and God has a plan and purpose for this all. We are trying to keep our eyes, and hearts focused on that because it's easy to let this situation get the best of us. We appreciate your prayers as we go about these next few weeks with these big changes. Praying that something just clicks in Abby's little body and she would start to desire food and gain the weight her body and brain need at this young age.
I can't make any promises, but I will try to keep you posted on our progress!
Hope you're still awake! :) If so.. here are some 3 year old pics of Abby! Enjoy :)
