Most times she'll have an episode each month....sometimes 2 in one month.
Typically, it hits my daughter in the early morning hours around 4 or 5 am. She'll go to bed perfectly fine then wake up in a rush to make it to the bathroom before vomiting.
The vomiting continues. Sometimes just for a few hours and other times longer. Her shortest episode (since the diagnoses) was around 3 hours and the longest was 24 hours. Sometimes she vomits just once each hour and other times it is more like every 30 minutes.
Can you imagine vomiting every 1/2 hour for a full 24 hours!?!
This last episode was like that. Sometimes she'll start out vomiting what little is left of her undigested food, but most times, she just vomits up what looks like foam. Depending on how long the vomiting continues, it progresses from that to dry heaving, to more of a yellowish stomach acid. Sorry, I'm not trying to be gross. We give her a dose of Zofran. Sometimes she vomits it right up and other times, it will give her a short break from vomiting.
This last time, she vomited the 1st dose up shortly after giving it to her. We can only give it every 8 hours. So, after 8 hours of vomiting, we tried again. It helped for 2 hours. In that time, she was able to keep an italian ice pop down. We always worry about dehydration during the longer episodes. I don't know why, but for some reason, these ice pops will stay down sometimes when nothing else will.
After 2 hours, it started up again. Anything we tried to have her drink or eat came right back up. After several more hours, we gave her another dose of Zofran. This time, the vomiting stopped completely.
So what is my daughter like during these episodes?
She is miserable!
Usually, a severe lower abdominal pain accompanies the vomiting. We haven't figured out this part yet. What is causing that pain? It is in the same spot nearly every time. Sometimes, we can feel a tiny little bump there in her intestine and other times...nothing. The doc told us it is probably food/waste still moving thru her intestines or trapped in that area during the episodes. She curls up into a tiny little ball and cries. The only time she leaves her spot is to vomit. After hours of this, she'll drift in and out of sleep due to exhaustion.
There is nothing we can do, nothing we can give her to make her feel better. We clear our schedules for that day and the next...and wait for it all to stop. We clear our schedules the day after because she feels puny and weak due to the vomiting and lack of food/fluid intake the day before. We spend the day after doing light things around the house like playing board games, video games, and watching movies. She gets LOTS of food and snacks and drinks to try to get some nutrients back into her little body. The day after that, she is back to normal...like nothing ever happened.
She has missed dance classes, water parks, festivals, summer day camps, field trips, and more. If her brother has anything on the schedule, he misses his things too if my husband is at work and there is no one else to take him. My son takes VERY good care of his sister when she is feeling bad...doting on her, tending to her every need, letting her watch endless hours of girly movies. He is so compassionate!
Let me just say though, with all the research I have been doing and the countless blogs and testimonies I have read, my daughter's episodes are nowhere near the severity of what others have to go thru. Some people's episodes last for weeks. WEEKS!?! My heart goes out to those people and I am thankful that my daughter's is not anywhere near that severity...at least not yet.
I worry because her episodes seem to be happening more often and are lasting longer each time. I worry, that if we don't figure out what is going on, we will be where these other people are. I worry because the last 2 times this has happened, she has gotten lots of ulcers near the back of her mouth because of repeatedly vomiting up stomach acid. I worry about what this is doing to her stomach and esophagus. I worry...a lot.
So, I research and I research some more...trying to see what others in this situation have done, what has helped them, etc...
There is no magical test to see what will work and what won't work.
It is all trial and error...experimentation.
We've started praying for her and for God to guide guys as you make choices about diet and such. It has to be so hard to deal with!
ReplyDeleteThank you Danaly. This really means a lot...
DeleteI don't even know you guys and that just breaks my heart. Have you ever looked in to doTerra oils? They suggest ginger and peppermint oils for vomiting. They may be less upsetting than traditional medications. My family just started using the oils and we love the results we get without the side effects. I do not sell them. Just wanted to offer up another alternative for your girl.
ReplyDeleteI have used some oils and actually used some this last episode. Sometimes they seem to help and other times not so much. We use DiGize which contains both ginger and peppermint, as well as other oils. We'll put a few drops on a warm wash cloth and lay it on her belly where she is having the pain. I know, for myself personally, I'll get swollen lymph nodes under my armpit sometimes if my body is trying to fight off some sort of virus or infection. It works great! It seems to take the pain away or at least make it more bearable as well as to help the swelling go down and eventually away. I think it aids my body in doing what it is supposed to to remove the toxins. I have never heard of Terra oils though. I'll have to look into it. Thanks :)
DeleteThe oils are from Doterra. Sorry for the confusion
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