Disclosure: I know that there are a lot of new parents of children with Down syndrome who read this blog. I do not want you to think that what is going on with my daughter is the future for your child. Ellie's issues are unique to Ellie. They are not related to Down syndrome.
|I made sure to pack all the important things for a hospital stay!|
Ellie did totally awesome during her stay. As in she was well behaved aside from trying to yank out her NG tube and she stayed in bed for the entire manometry study (6 hours!). She did great with anesthesia and she SLEPT! Now I think the first night was because she was up late, had versed, and then was up a lot in the middle of the night. The next night might have been due to post-anesthesia, and fentanyl. At home, she is still continuing to wake all of us at 3am. (It was 2:30am before the hospitalization). She is, of course, up for the entire day. Yes, awake from 3am - 7pm. That is another post entirely
|Top right: you can see how distended her tummy is from all the GoLytely|
So. . . we still don't really have answers.
This was to prepare her for the colonscopy the next day. An entire gallon of GoLytely was run through and NG tube and was, in theory, supposed to clear all the crap out of her intestines. I say "in theory", because it took way longer than anticipated. So long that she wasn't fully cleared out in time for her surgery! Dr. S called it "good enough" and opted not to post-pone the procedures.
Brain MRI with Contrast: Normal!
This was performed because Ellie had a new finding of central sleep apnea on her repeat sleep study from March.
10 vials, my friends. Then it still wasn't enough so another vial was drawn. We looked at Thyroid levels, Ha1c, CBC, metabolic panel, inflammatory markers, celiac, and IgG/IgM/IgA gammaglobulins, etc.
Of the blood work that is back, all is normal except for a mildly elevated thyroid stimulating hormone [TSH]. After a brief in-hospital endocrine consult, it was recommended that we repeat her TSH and free T4 in 2 weeks at the pediatrician's office. I just love adding more doctor's appointments to our schedule. Hypothyroidism is very common in Ds and it is often said a "not if, but when" they get hypothyroid so I am not overly concerned.
|She wasn't able to eat during the bowel prep until after her surgeries so 32 hours without food.|
The donut was awesome!
Upper Endoscopy aka EGD:
Back at the end of January, we did an upper endoscopy to definitively rule out celiac and lactose intolerance. All came back normal, but her esophagus, stomach, and duodenum (upper part of small intestine) were inflamed. We stared her on Protonix which is a proton pump inhibitor for ulcers and reflux. Last week, we did a repeat EGD to see if the Protonix worked. I am happy to report that the esophagus and duodenum look good and her gastritis is now mild. The doctor also took 8 EIGHT biopsies of the duodenum as opposed to the usual 2 to double check the celiac screen.
|Someone was pretty excited when she found out the bed could move.|
Colonoscopy: Normal! No need for any biopsies either
This was the big test to determine how Ellie's colon functions - think contractions or peristalsis. Is she missing nerve ganglion in the colon, delayed transit, etc.? So. . . it was mostly normal. No absence of nerve cells or other motility stuff. She could not eat anything for over 8 hours before the test. She showed normal colon contractions at the beginning. Two hours in, we gave her food. Her colon showed an appropriate response. An hour later, they gave her laxatives. Her colon did not respond, at all. Not a real shocker. There is no explanation for her severe constipation.
|Colon Manometry or Colon Motility Study set-up|
So now what?
It will be another week or so before we get the biopsy results. It will be another week before we get the full Manometry results. In 2 weeks, we repeat the thyroid panel. We are doing high dose stimulant laxatives (as opposed to her osmotic ones) for 2 weeks on and 2 weeks off. You cannot do stimulant laxatives every day because the gut gets dependent on them. We follow up in 1 month. If not a big improvement, we have to make some big decisions.
Severe constipation is a huge deal. It has lead to Ellie's weight loss. There is an increased risk for gut infection, intestinal perforation which can lead to sepsis. It is causing Ellie's chronic urinary retention, which puts her at high risk for UTIs and even kidney damage. This is Ellie's life. It is getting worse, not better. We have tried everything natural, medical, and everything in between. I was really hoping for more answers so that we would have a "fix" a good treatment plan.
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