Its been a journey!! We moved to Florida and got care established and they did yet another endoscope on her. Come to find out that she has this rare condition called: sucrase-Isomaltase deficiency. This happens in the brush border of the intestines that lack enzymes to process sugars and starches. We got this diagnosis, but she was doing well enough that she was gaining on her own growth curve nothing to worry about. They tried prescribing her something, but insurance denied it and we went on our merry way because she was ok with what we were doing. Still taking her to appointments and moved to a neighboring county so switched up doctors. Life changed, I started working as a teacher for a hot minute. Got overly busy and canceled an appointment that never got rescheduled. Along came covid. At this point, doctors aren’t seeing patients in person, and we waited. After Thanksgiving, we took a small trip and got pictures taken. She was doing great she actually looked chunky for once!! By December 16th she looked like a skeleton, she quit eating!! I take her to her PCP who doesn’t always work on the days I take her in. She got assigned to another doctor. I knew she needed her gastro doctor, and she needed a referral to see him. The only referral they wanted to give her was for covid 19 depression…. she weighed 35lbs!!!! Like hello!!! So, I took her to the ER on Christmas day, I already had an appointment set up for the gastro clinic. Well, I forgot to include the nutritionist in this referral. Sigh!! However, we stayed a couple of days in the hospital, and they gave the referral, she ate the food enough that we went home. We go to the appointment the doctor is alarmed but we just got out of the hospital, so he wanted to wait and see. Well, they admitted her for 5 days and observed her. The next month they scheduled the endoscope. Keep in mind that we had forgotten about this diagnosis. We were focused on the initial diagnosis of EE. The doctor told me that he doesn’t think she has EE. Sigh. After her scans came back, she didn’t look like she had it either. He pressed me about it, telling me that the first doctor was wrong, and I thought I will bring you pictures from the first scans. I know where they are. We went home and I went to find them and couldn’t find them at all. However, I did find the sucrase Isomaltase diagnosis and brought it to the next appointment. At this point, I am seeing these results and reading about it and saying how the heck did we get this far without this being looked at closer??! I had signed releases for them to get this information at least 3 times before, and they still didn’t get them. I brought in my copy, and they copied it!! When the doctor saw the results of that testing taken when she was 3 and she is now 9.5 he got the most mortified look on his face ever. He left the room and brought in the nutritionist!! The nutritionist remembers me telling him about it but said without the actual paperwork on it he didn’t think too much about it, because if she had that she wouldn’t be gaining at all!! So, this is how it went. I had a few more stays in that hospital with her after that. She finally got a feeding tube!! At this point, I will tell anyone that reads this the feeding tube is not a bad thing. We can only do Kate Farms milk because she is allergic to milk which most people with this condition don’t have that issue and can gain weight through drinking milk. Soy is not a good option as we have an autoimmune condition. My life would have been so much easier if we would have gotten this when she was 3 but there was no real need at that point in time. Mostly because she breastfed until she was 4!! The breastmilk as little or as much as she got was exactly what SHE NEEDED!!!
She got her feeding tube in March 2021. They wanted two cartons of milk a day, but this girl can’t handle all that and she did maybe a carton. She gained weight that then they were concerned that she was getting too big, so they cut her back to half a carton a day. About six weeks after that appointment where they cut her back, I increased her to a carton a day because she lost 10lbs. Right now, her weight is stable on a carton a day. She also eats regular food, but she does not eat enough food to maintain herself.
Also, while in this nightmare some nurse got an attitude with me and turned me over to DCFS. I was doing everything that I could to get this worked out, so it didn’t go very far. However, that nurse got into a little trouble over her part in it. This vindictive action is the last thing anybody needs when going through something like this. The most ludicrous thing that they wanted was for Rebekah to get counseling because she said something after surgery about the doctors. Like really, she just woke up with mind-altering substances in her body and you are going to request counseling for that. They tried to tell me that I needed counseling too. I asked them if they would like to live my life for one minute. Of course, I have trauma you are causing it!! Anyway, its not been pleasant at all!! However, it is my journey, and I am sharing it with you. This is how we cope!!
She got her feeding tube in March 2021. They wanted two cartons of milk a day, but this girl can’t handle all that and she did maybe a carton. She gained weight that then they were concerned that she was getting too big, so they cut her back to half a carton a day. About six weeks after that appointment where they cut her back, I increased her to a carton a day because she lost 10lbs. Right now, her weight is stable on a carton a day. She also eats regular food, but she does not eat enough food to maintain herself.
Also, while in this nightmare some nurse got an attitude with me and turned me over to DCFS. I was doing everything that I could to get this worked out, so it didn’t go very far. However, that nurse got into a little trouble over her part in it. This vindictive action is the last thing anybody needs when going through something like this. The most ludicrous thing that they wanted was for Rebekah to get counseling because she said something after surgery about the doctors. Like really, she just woke up with mind-altering substances in her body and you are going to request counseling for that. They tried to tell me that I needed counseling too. I asked them if they would like to live my life for one minute. Of course, I have trauma you are causing it!! Anyway, its not been pleasant at all!! However, it is my journey, and I am sharing it with you. This is how we cope!!
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