Boy, this is when things started to really change. Kiera (my baby!) was a big eater up until now, although she could not use her hands for much more than communicating her needs via texture board as to what she wanted to eat and drink, then it seemed like all the sudden she just would not want to eat a thing.
We tried all of her favorite foods (everything had to be blended well) she wanted nothing to do with it.
I made an appointment with a feeding clinic so they could do an evaluation. They did a swallow study, everything came back just fine, they did a scope and again found nothing. They came back to me with this just being a behavior issue and that there is no reason why she can not eat orally! I thought that was crazy but took their behavior plan and Kiera home to give it a shot.
So imagine, at the age of 7 this is how our meals went; I would take a small baby spoon (we were using a bigger spoon prior) and 'tell her that she needs to take at least 10 bites' then with every bite count out loud so she knows where we are. I felt like a fool doing this, my daughter does not understand the concept of counting, and if she did not want to eat ,there was no way to get a spoon in her mouth!
So we spent a few more years trying different methods, giving her Ensure to keep her weight up, but to no avail. She lost so much wt that it became apparent that we needed to do more. We first tried to use a NG feeding tube, this a tube that goes in her nose and is threaded into her stomach. This was the worst thing ever, she hated this so much and she looked very scared every time I attempted. I then refused to put her and me through this 3-4 times per day. Then she received a G feeding tube.
We started out doing bolus feedings, well that was not going well at all. She was in so much pain after a feeding and she would end up throwing it up anyway. So then we had a J threaded through the G. Kiera then would tolerate her feedings better but she was still throwing up. Many times the J tube would get pulled out (not by Kiera, she never used her hands) which then brought us to the ER every time to get it re-threaded.
Well, we had enough of taking trips to the ER, so we had the doctors place the J tube via surgery.
Even after placing the Jejunostomy tube, Kiera was still having lots of issues with emesis, so it was decided by her Doctor that she needed a surgery called Roux-en-Y, it takes the lower intestines and brings it to the surface of the stomach wall so that there is access to place a mickey button. Her feeding then will bypass her stomach all together. This did not stop the vomiting/retching, but it did help to gain the weight that she needed to keep her healthy.
At the age of 10, Kiera was placed on the Keto diet. By then we had gone through so many seizure medications and nothing was helping at all. We had to give this a shot.
The Keto diet showed promise right away, we were thrilled. Nothing has helped her seizures as much as the diet, finally she could get through a day or two without any seizures!
A few months later Kiera ended up getting very sick, the ER Doctor refused to work with us unless we took Kiera off the diet. We were young and desperate, so we took her off the diet.
After that it was very hard to convince her Doctors to put her back on the diet. Back then the thought was that the diet did not work well after about 10 years old. So we were back to trying new and some old medications again.
Please follow our story as I blog more, Kiera is now 21 years old so I have a ton more to write, thank you for reading this so far, Kiera's Mom.
- Skills I had gained, taylor sit with minimal support for 30 seconds to 1 1/2
- Skills I had lost, Eating orally.
- Diet, Keto diet for 1st time
- Diagnoses, Severe red dye allergy,
- Surgeries, Gastrostomy and Jejunostomy mickey buttons for feeding
Roux-en-Y surgery
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