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Post by smasonnc on Jun 19, 2024 13:26:00 GMT
My daughter had something similar when she was in high school. They tested for EVERYTHING, h-pylori, did a colonoscopy, endoscopy, all kinds of scans. Nothing for months and she lost 40 pounds. They wanted to do exploratory surgery and I said no. They had no idea what they were even looking for.
A friend recommended a nutritionist nurse so we tried that, grasping at straws. She took a blood sample and she had some strange modalities, but with diet and supplements my daughter was eating normally in two weeks. In her case, it was that she'd been on antibiotics twice which killed her stomach flora. Maybe it's time to go outside the system.
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Post by cynipidae17 on Jun 19, 2024 13:57:26 GMT
I hope your daughter feels better soon. Did she have anxiety before getting sick? I just ask because my daughter was diagnosed had many symptoms that seemed like POTS, but she ended up being diagnosed with functional neurologic disorder which basically meant that some worry/anxiety triggered her body to feel sick even though nothing was wrong with it. In her case she had vertigo all of the time and then started throwing up from being so dizzy. I remember how frustrating it was to try and figure out what was wrong with her and I think it took us almost 6 months to figure it out. I hope you figure it out soon.
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christinec68
Drama Llama
Posts: 5,437 
Location: New York, NY
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Post by christinec68 on Jun 19, 2024 14:37:01 GMT
I don’t have anything to offer but the hope that you get some answers and that she starts to feel better soon. 🙏
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kate
Drama Llama
Posts: 5,598
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Jun 19, 2024 14:58:32 GMT
Praying you get some effective solutions for DD.
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seaexplore
Prolific Pea
Posts: 8,887
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Jun 19, 2024 15:32:11 GMT
Any chance she smokes weed? If so, sounds like CHS This was another idea I had. One of my HS students has this and will not quit smoking/using. They’re miserable and I just look at them and say - Well, you know how to make it go away. |
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hannahruth
Pearl Clutcher
Posts: 2,718
Location: Adelaide, Australia
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Post by hannahruth on Jun 19, 2024 15:33:53 GMT
Oh, I am so sorry to hear this. I have no experience with any of it, but I wish your daughter well quickly. Love this community for advice. This ^^^^ |
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seaexplore
Prolific Pea
Posts: 8,887
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Jun 19, 2024 15:35:46 GMT
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Post by lily on Jun 19, 2024 15:40:17 GMT
I really hate to bring any more concern, but they need to check her for a brain tumor (MRI WITH CONTRAST). My best friend had the same symptoms and went through tons of testing with doctors focusing on GI, and it turned out to be a brain tumor. Brain tumors can especially cause vomiting in the morning upon waking. I am so sorry your daughter is so sick.
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Post by mollycoddle on Jun 19, 2024 15:54:04 GMT
No advice, but I hope that you get some answers today. 🤞🏻
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Post by coloradocropper on Jun 19, 2024 19:02:27 GMT
We just got back. I was impressed with the PA (all the docs were on vacation). She gave us plenty of time and read through the timeline that I posted in my first message here. She said the first place to start was with an endoscopy and biopsy of the small intestine and stomach. That happens tomorrow at 8:30 am. They were very proactive in getting her in quick. Another blood panel of other things she's looking for. She refilled the suppositories and the oral prometha (can't remember how the rest is spelled).
We also talked about CHA, which honestly is a possibility. Apparently, the pot around when I was in college is not the same as today. More THC in it these days is making people sick. So that's the update for now.
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Post by gillyp on Jun 19, 2024 19:29:49 GMT
Hopefully you are on your way to answers.
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Post by Sorrel on Jun 19, 2024 19:57:08 GMT
Good luck finding some answers! I have Ehlers-Danlos and IBS, and my younger daughter has EDS, POTS and dysautonomia. Your daughters symptoms sound like an extreme version of what my daughter goes through at times.
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Post by mom on Jun 19, 2024 21:36:39 GMT
We just got back. I was impressed with the PA (all the docs were on vacation). She gave us plenty of time and read through the timeline that I posted in my first message here. She said the first place to start was with an endoscopy and biopsy of the small intestine and stomach. That happens tomorrow at 8:30 am. They were very proactive in getting her in quick. Another blood panel of other things she's looking for. She refilled the suppositories and the oral prometha (can't remember how the rest is spelled). We also talked about CHA, which honestly is a possibility. Apparently, the pot around when I was in college is not the same as today. More THC in it these days is making people sick. So that's the update for now. I am glad they are taking you seriously and really getting the ball rolling. Hopefully whatever it is will come back as an easy fix! |
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Post by cat2007 on Jun 19, 2024 23:09:47 GMT
We just got back. I was impressed with the PA (all the docs were on vacation). She gave us plenty of time and read through the timeline that I posted in my first message here. She said the first place to start was with an endoscopy and biopsy of the small intestine and stomach. That happens tomorrow at 8:30 am. They were very proactive in getting her in quick. Another blood panel of other things she's looking for. She refilled the suppositories and the oral prometha (can't remember how the rest is spelled). We also talked about CHA, which honestly is a possibility. Apparently, the pot around when I was in college is not the same as today. More THC in it these days is making people sick. So that's the update for now. I am glad they are taking you seriously and really getting the ball rolling. Hopefully whatever it is will come back as an easy fix!  |
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Post by AussieMeg on Jun 19, 2024 23:16:42 GMT
Maybe it's time to go outside the system. I'm glad your daughter got better, that must have been awful for her. But I think it's a bit early for the OP's daughter to go outside the system when she hasn't had all of the other tests yet. She hasn't even had an endoscopy! |
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keithurbanlovinpea
Pearl Clutcher
Flowing with the go...
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Post by keithurbanlovinpea on Jun 19, 2024 23:21:29 GMT
Hopefully you are on your way to answers. We navigated CHA/CHS for 3 years with my DD before we truly accepted that's what it was, and she finally quit for good. If there is even a remote chance that this is what it is, please I beg you to press your DD to quit. CHS took so much time from my daughter's college years and she STILL has issues with trigger foods and stress. CHS can cause long term damage. |
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Post by nightnurse on Jun 19, 2024 23:38:14 GMT
We just got back. I was impressed with the PA (all the docs were on vacation). She gave us plenty of time and read through the timeline that I posted in my first message here. She said the first place to start was with an endoscopy and biopsy of the small intestine and stomach. That happens tomorrow at 8:30 am. They were very proactive in getting her in quick. Another blood panel of other things she's looking for. She refilled the suppositories and the oral prometha (can't remember how the rest is spelled). We also talked about CHA, which honestly is a possibility. Apparently, the pot around when I was in college is not the same as today. More THC in it these days is making people sick. So that's the update for now. I’m so glad and impressed they can get get her in for the egd tomorrow morning! It takes so long to get answers and that’s so frustrating, I’m so glad it’s moving quickly. Good luck |
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valincal
Drama Llama
Southern Alberta
Posts: 5,805
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Post by valincal on Jun 19, 2024 23:47:58 GMT
Glad you got her in so quickly! Hope you get some answers and that she’s feeling better soon.
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ModChick
Drama Llama
True North Strong and Free
Posts: 5,093
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Post by ModChick on Jun 20, 2024 4:19:21 GMT
Hoping you all get answers soon and your daughter finds some relief. Sounds so horrible what she’s been through.
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purplebee
Drama Llama
Posts: 6,802
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Post by purplebee on Jun 20, 2024 15:21:15 GMT
Sending hugs and hope for an answer quickly.
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kate
Drama Llama
Posts: 5,598
Location: The city that doesn't sleep
Site Supporter
Jun 26, 2014 3:30:05 GMT
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Post by kate on Jun 20, 2024 16:30:00 GMT
Just have to say that you're a great mama.
God bless you & DD!
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Post by MadamG2U on Jun 20, 2024 16:53:09 GMT
Keeping you and family in my thoughts and prayers.
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Post by lurker on Jun 20, 2024 17:41:54 GMT
Hope you are on the road to finding answers about your daughter's condition. Poor girl. Poor mama.
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teddyw
Drama Llama
Posts: 7,161
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Post by teddyw on Jun 20, 2024 17:51:48 GMT
Hopefully you are on your way to answers. We navigated CHA/CHS for 3 years with my DD before we truly accepted that's what it was, and she finally quit for good. If there is even a remote chance that this is what it is, please I beg you to press your DD to quit. CHS took so much time from my daughter's college years and she STILL has issues with trigger foods and stress. CHS can cause long term damage. If this is a possibility for your dd she can alleviate that starting today before she even has the other tests. I hope she starts to get well soon. seaexplore thanks for sharing that article. |
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Post by malibou on Jun 20, 2024 22:28:31 GMT
I hope tomorrow brings answers. I can't imagine watching my kid be that sick.
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Post by coloradocropper on Jun 20, 2024 22:54:57 GMT
Then endoscopy went well. Based on what the doctor saw, he said he'd bet money this is all related to CHA. My mama heart is so disappointed because, believe me, we had these discussions often throughout the years. I really thought we did our due diligence. In many ways, I feel like we failed too and it's quite humbling. In the same breath, I'm immensely grateful that this is something that can be corrected. Lots of tears here today and discussion. She acknowledges that she was so sick and will never forget this time in her life and is committed to staying away from pot. Here in Colorado, we were the first state to legalize recreational pot and it has become normalized. Heck, two of her college roommates smoke pot with their parents! As we have found out, it comes with a hefty price for some people. The best lessons in life are the hard lessons and I told her that she must be destined for greatness because God gave her good kick in the butt to open her eyes. I would still appreciate continued prayers as we move forward.
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pantsonfire
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Take a step back, evaluate what is important, and enjoy your life with those who you love.
Posts: 6,296
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Post by pantsonfire on Jun 20, 2024 22:56:32 GMT
Then endoscopy went well. Based on what the doctor saw, he said he'd bet money this is all related to CHA. My mama heart is so disappointed because, believe me, we had these discussions often throughout the years. I really thought we did our due diligence. In many ways, I feel like we failed too and it's quite humbling. In the same breath, I'm immensely grateful that this is something that can be corrected. Lots of tears here today and discussion. She acknowledges that she was so sick and will never forget this time in her life and is committed to staying away from pot. Here in Colorado, we were the first state to legalize recreational pot and it has become normalized. Heck, two of her college roommates smoke pot with their parents! As we have found out, it comes with a hefty price for some people. The best lessons in life are the hard lessons and I told her that she must be destined for greatness because God gave her good kick in the butt to open her eyes. I would still appreciate continued prayers as we move forward. Prayers of positive movement forward and healing and that she can find other ways to deal with her feelings and overcome the need to smoke. |
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Post by scrapmaven on Jun 21, 2024 2:08:26 GMT
I'm really glad that you got quick answers and that it's something that your dd can fix. Though I know that it is due to a drug, this is, hopefully enough of a scare to get her to stop using for good. If she's doing too much and it's hard to stop there are so many options for treatment and she has the summer to heal. Counseling can help her to find healthier ways to address her feelings, as well.
Let me reassure you, that you did all that you could to prevent drug use. This isn't about you doing anything wrong. This is about peer pressure, being away from home and testing boundaries. Now she'll need your support more than ever and you are there. When people w/toddlers talk about how difficult it is at that age, I try not to smirk. They have no idea. Once they grow up all we can do is listen and hopefully, they will too, once in a while. ((((HUGS)))).
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Post by FuzzyMutt on Jun 21, 2024 2:12:37 GMT
My daughter’s ex boyfriend had CHS. He experienced seizures from time to time. It was terrifying for my daughter. They broke up before he finally figured out what the problem was.
I hope your daughter is smarter than he was, and makes the changes she needs to quickly.
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seaexplore
Prolific Pea
Posts: 8,887
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Jun 21, 2024 4:30:54 GMT
I’m so glad it’s something she can fix. Please do not feel like a failure. You can discuss, be open, talk and talk and talk but some kids just need to learn it for themselves. This is a tough time but you will all get through it.
If she cannot get off the pot on her own she may need inpatient. I’m sure there are many other parents out there in your same situation. See if there are support groups for parents?
Much love and hugs as you wade thru this and she heals.
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