Gi Dr Is Not Done After All :)

[kclynn]

I should know better. Yesterday we talked to the nurse and she was just relaying the information from the current test. Now I will say if we had allowed it the Dr. would not neccasarily call us but she did say she would have the Dr. call us and he did! We had a great conversation. He is still concerned about how to help us. He believes he probably sees quite a few patients with dysautonomia that are undiagnosed. I asked him about Domperidone and he thought that could be a great medication for my son, discussed the issues of getting it, is going to talk to his colleague who has used it about the best way for us to get it. We do have a Medicine Shoppe here but don't know if they will make it.

Have to remember to keep pushing and question everything!

I know some on here have used it so if you would PM me the avenues you used to get it I would appreciate it.

[Christy_D]

Well I just posted to your other GI Doctor post is done with you, so good to know he is not done trying to help you. Let me know if domperidone helps, it is one medicine we have not tried yet.

Christy

[JennaC]

In the past, I got domperidone from an online Canadian retailer. It is afordable and easy to get with a prescription. I only had to scan it in...

I see a GI motility specialist that swears by domperidone for cases like ours. I feel like that medication and switiching to a gastroparesis diet helped me start improving from many of my POTS symptoms.

[brownsea]

i suffered with extreme nausea, so much so i couldnt eat or drink. the neuro tried me on domperidone and it worked within a few days. thank goodness. i had tried other nausea meds over two years, no of which worked at all. i also tried wrists bands, ginger etc, which didnt work.

i hope you can get the med soon, and fingers crossed it will work. x

[sue1234]

My gi doctor prescribed it and I was able to get it compounded at a local pharmacy. Unfortunately, I didn't notice anything from taking it, and with it being so expensive for me(about $100 month), I quit taking it. IF it would have worked, I would gladly scrounge around for the $100/month to keep taking it! I hope it works well for your son's symptoms!

[JennaC]

Sue,

It should be a lot cheaper from Canada. I think I paid $100 for 3 months and I took 4x 10mg a day. My Dr. said it was important to take it 3-4 times a day to work.

Also I believe Zofran was mentioned early... With delayed gastic emptying zofran is an awful choice becasue it affects the vagus nerve, which slows motility down even more.

[sue1234]

Jenna, yea, my doctor was prepared to give me a prescription to send off to a Canadian pharmacy, but I didn't need to. I had taken it as prescribed, but it didn't do anything for me. I did/do not have an issue with nausea, but do have horrendous bloating. Maybe that was the difference for me. Plus, I had shown via testing to have slow emptying, so was hoping it would help.

[JennaC]

That is a bummer. I can definitely relate to the bloating! I had to stop domperidone after a year becasue I'm pretty sure it gave me annoying low grade fevers.

[kclynn]

I hadn't heard that about Zofran, something to think about. My son now gets nauseous even smelling or thinking about food. I hate this. I know that may be a result of over a year of getting nauseous when he eats. He has stopped losing weight for now, I think he forces himself to eat. Sometimes he only eats applesauce for lunch and a protein shake for breakfast. But late he will eat a meal (like 9:00) which might actually go down ok, but the nausea will happen, maybe half way through or 30, 60, 90 minutes later. For now Zofran is all we got, if it gives him a temporary relief. He doesn't take it every day or all the time. I know when the nausea hits, other pots symptoms skyrocket, like tremors, dizziness even laying down not tied to blood pressure, etc...