Any One Ever Have Success With A Gi Doctor?

[kclynn]

I posted recently about my son's troubles with nausea and problems with his entire digestive tract really. The GP is now going to refer him to a GI (finally!) but the more I read the more I wonder if anything they find out will help. Is this just something to have to live with? I asked the GP to run a serum test for Celiac and food sensitivities and she said she has already done the Celiac at some point but would do the food sensitivities. I know this might yield some information or may not and he could still be sensitive to some foods even if the test doesn't show it, right? Other than that she wants me to keep a food diary and bathroom diary, which I think is good and will be helpful information.

Side note:

The nurse asked me if there was someplace I prefered him to be referred and I said I didn't care other than I would hope for someone who might have some idea of how his dysautonomia might be impacting his GI problems.... are you ready for her comment? She blurted out WE don't even understand THAT! Uh, yeah, and there is the problem.

[puppylove]

My GI has been some what helpful. Luckily, we found one that is very knowledgeable on POTS and he has been trying to find me the right medication. He has also diagnosed me with a stomach ulcer, GERD, and lactose intolerance. If we can finally find a medication that works to help my nausea I would say it was very beneficial.

[songcanary]

Has he been tried on doxepin? It is a godsend for me. I tried weaning off recently and lasted 12 days before the nausea got so increasingly bad I couldn't take it anymore. I resumed it and the nausea went away the very next day. I am on 25 mg at bedtime.

[JennaC]

I see a GI motility specialist and it has made a huge impact on helping me feel better. They seem to be knowledgeable about autonomic problems. I was diagnosed with gastoparesis and an esophageal infection earlier this year. With treatment and diet modification I am not nauseous every day.

[Christy_D]

Has he had a gastric emptying test done yet? Also, like Songcanary, doxepin was a big help but it didn't last for my son(lasted 6 weeks). He still takes a low dose at bedtime and does worse when we stopped it completely. Perhaps a motility test would be helpful.

Christy

[kclynn]

He got an appt the 26th of this month! Not as bad as I feared. You know how they list the Drs. special interests? This one is hepology and bile acid metabolism, and GI pharmacology..hmm He did his residency at John Hopkins. Hopefully they can figure it out. Kind of wish he was with a motility specialist but not sure that matters?

[juliegee]

KC Mom-

Forgive me for not responding sooner. i had seen your post, but got sidetracked... Is your son already DXed with some sort of dysautonomia? If so, I think I may have some helpful information. Your son's symptoms sound IDENTICAL to my son's when he was 12 y/o. My son had lost so much weight. He was 5'8" and growing and didn't even weigh 100lbs. Every time he tried to eat, he would become very nauseous and would ultimately vomit. He was finally DXed at Johns Hopkins by a pediatric GI motility specialist, named Anil Darbari- who is a pioneer in connecting GI motility issues with dysautonomia. Dysautonomia very often causes disruptions in GI motility, usually slowed....causing disabling symptoms.

First, shame on your son's doc for not getting him to a GI sooner . That being said, I am fairly certain that a GI would be helpful ONLY in a very limited way. S/he will do an endoscopy, maybe colonoscopy, and perhaps order a gastric emptying study/GES. They will rule out anatomical problems and might be able to show gastroparesis with the GES.

If your son's GES is normal- my son's was- do not lose hope that this is a motility issue. A GES is a very non-standardized test that simply delivers a snapshot of how your son's tum is behaving at that moment. It is very rudimentary & not definitive in DXing a motility disorder.

My guess is that your son will need to see a pediatric GI motility specialist- one who gets the connection to dysautonomia. I HIGHLY recommend Dr. Darbari. Another great option if you are in the southeastern US is Dr. John Fortunato at Duke. He was a fellow at Hopkins working with Dr. Darbari when my son was seen. He's since written extensively on the connection between dysautonomia & GI motility. Keep in mind, there are ONLY a handful of these specialists in the country so travel will be necessary.

At Hopkins my son did a specialized GI motility test called an atroduodenal manometry. This was a 24 hour test, where they placed probes through out his GI tract- in his esophagus, tum, and small intestine. They go through the nose & are placed under general anesthesia. The patient is encouraged to eat normally & keep a record of what he is doing throughout his stay. A specialized tech will later painstakingly read the pressures (note activity- like eating a snack, doing the TTT, etc.) and determine whether or not there is a dysfunction in the peristaltic waves- whether they are caused by a neuropathy or myopathy, etc.

My son was ultimately DXed with Neurally Mediated Hypotension/NMH that apparently led to his small bowel dysmotility. He fainted on the TTT, right after he barfed. He said that the test perfectly simulated every day life for him. His treatment involves strong GERD meds, a GI prokinetic to improve motility, and anti-nausea meds as needed. He is on a gastroparesis diet- low fat, low fiber: lean meats (chicken, fish, turkey, eggs), mushy vegs (baby food is great!), and white everything (bread, potatoes, rice, pasta, etc.) Non-dairy is very important as milk protein is very hard to digest when the tum is this disabled AND many of these kids are found to have a hypersensitivity to it. We use Rice Dream in lieu of milk and Smart Balance in lieu of butter. Rice dream and frozen fruit make an awesome smoothie.

I have sooooo much more information to share, but don't want to overwhelm you. Try the diet while he waits for all of these appts. My son's DX took about a year and a good GI should try imperically try the meds to see if they help. My son was already on many of the right meds before Hopkins did the extensive testing.

Lastly, my heart breaks for you. It is so hard to see your sweet boy suffer and become more sick day-by-day at a time when his peers are thriving and becoming more independent. I remember this period all too well and feel certain that you will find help. You are a wonderful Mom to be seeking answers.

Better Days Ahead-

Julie

[janiedelite]

I made sure that the GI doc I went to see was knowledgeable about how dysautonomia affects the GI tract. I didn't want to go through another appointment where the specialist only refers me to someone else.

[kclynn]

Julie, DX POTS and NMH, two places. He never vomits but feels like it sometimes. I was just briefly looking a publications for this Dr. and saw one in 2011 that makes connections with the GI tract and mast cell activation, which I think is very interesting. May not have anything to do with my son, but might and I think it tells me this Dr. is interested in newer theories. I have to go, but will look into it more later.

[kclynn]

I made sure that the GI doc I went to see was knowledgeable about how dysautonomia affects the GI tract. I didn't want to go through another appointment where the specialist only refers me to someone else.

I think that is a very good point!

[juliegee]

Really??? Dr. Darbari making the MCAD connection? Wow, he wasn't back when my son saw him 6-7 years ago. BUT, coincidentally, THAT that is the other thing I wanted to bring up. Now that docs have correlated dysautonomia & GI motility, it is extremely important to figure out the underlying cause of the dysautonomia....more and more docs are learning that mast cells, indeed, are the real trigger- causing BOTH the dysautonomia & GI motility issues.

Here is a great artcle: http://alford.grimtrojan.com/Mast_Cells_GI_Motility_Disease.htm

I think I can recommend Dr. Darbari even more highly now As a matter of fact, my son needs to see him again for a tune-up.

Keep us posted on what you learn-

Julie

[kclynn]

Julie - No, no the Dr. my son is scheduled to see at the Children's hospital in Kansas City. His name is Dr. Ding-You Li. It is a teaching hospital and he is a professor and Medical Director.

[PetuniasMom]

kcmom - i often find myself 'mmm-hmmm'-ing when I read your posts, as my daughter sounds similar in so many ways. Last spring and summer, before medication, she was nauseous 24-7, along with pain in her stomach. When she started Florinef, she did have quite a bit of improvement in this area - and if I understand right it was because she had more blood volume with the florinef to aid the whole digestive process. However , the last month has brought a change for her and while she is not as nauseated as she was, the symptoms are returning and her tummy pain is BAD. She would be angry if I discussed bowel movements here, but I know that is involved. Interesting to me that you mentioned mast cell, and I am on my way to reading the article - she has experience intense itching lately, for no reason, and she woke me up last night after experiencing what I feel others describe as a 'flushing' episode.... feeling faint and unwell afterwards, red cheeks and almost feverish... I think this is sort of mcad symptoms - but have to read more.

Not to get sidetracked - my Pediatric GI had little to offer other than to eat an easy to digest diet, low fat, low fiber. And I hate to say it that way - little to offer - because he is the one who diagnosed her in the first place and sent her to the cardiologist which led to her diagnosis. He had the most to offer us in that way!

Macks mom - If you would be willing to share, I would love to know what meds your son takes that are the GERD medications, and the GI prokinetic. We tried 2 different medications for motility and both had awful side effects. We have looked into the liquid erythromycin but apparently there is a supply issue and we arent able to get it anywhere. She is struggling at the moment, and I would do anything to help her

[juliegee]

Hi Petunia's Mom-

For GERD, Mack takes nexium in the AM and ranitidine in the PM. For his prokinetic, he takes liquid erythromycin, called Ery-Ped, 800mg. It is usally pink, bubble gum flavored, but his latest batch is banana flavored. He takes a tiny dose, 14/ to 1/2 tsp before meals. He has experiemnted and found that less is more when it comes to a prokinetic. It is supposed to very slightly irritate the GI tract into emptying more quickly. BTW, he also takes florinef, thermotabs, and fluid loads constantly. ALL of this has helped the nausea.

Yeah, finding a pharmacy that carries the erythromycin is hard, BUT any pharmacy can order the Ery-Ped. It s the last one left I think. Mack started on reglan- did your daughter also? WORST drug ever. He's never tried domperidone, but we do have it in the house in the event that the Ery-Ped stops working. It is a shame that so few meds are available for such a disabling illness

Hope some of this helps your daughter. It is heartbreaking to see your child suffer.

Hugs-

Julie

[Tzipora]

I'm still really new to the Dysautonomia stuff but I am extremely familiar with GI stuff. I have very severe gastroparesis that has been refractory to treatment. It was actually my motility specialist who figured out I had Dysautonomia first and then referred me to neurology. When the motility specialist got the tilt table results he literally said "I KNEW IT!" So there are definitely GI's out there who get it! I also see a general GI because the motility specialist is further away and is someone I can only see every 3 months. And while Dysautonomia is something he's not very knowledgable out, he's an AMAZING doctor who is trying to do all that he can to help me and so he's learning and willing to talk to all my other doctors. I've been screwed over medically A LOT and there are a lot of bad doctors out there too, as almost anyone with a rarer illness knows, but there are some excellent doctors out there too!

I'll also add that when I first got sick with GI problems I saw an absolutely terrible GI while hospitalized who flat out scared me away from seeing any GI for months. And so I just suffered pretty terribly and got malnourished and lost a lot of weight, etc. But now my GI doctor is the most important one on my "team" and while I have a very severe case and am dependant on IV nutrition to survive and a lot of treatments have failed me, even I will tell you seeing a GI is so worth it!

And the problem is that Dysautonomia and the related GI issues are very tough to treat. You're probably not going to meet a doctor who can fix everything but on the other hand there's a whole lot GI can do to help alleviate your son's GI symptoms and improve his quality of life and that is hugely important. And you may have to try a few doctors to find the right one but it's in your son's best interest. I don't know how old he is but the potential malnutrition that can come from GI issues is a nasty thing no matter what a person's age but especially bad in people still growing. So in my mind, if your son is having any sort of issue, he should get checked out and hopefully the doctors will be able to help. My GI issues have literally almost killed me on two seperate occasions so I'm a huge advocate of getting seen and checked out and finding the right doctor who will help.

And with that I wish you the best of luck. And I can't even imagine how hard it is to be the parent of a child with chronic illness. My own parents don't cope very well and I don't even live with them so I can't even imagine how hard it must be for you. And I know you undoubtedly wish for a cure and to make it all go away but even if that's not entirely possible, don't give up trying, don't give up fighting for your son. It is the best thing you can do. It's something I wish my own parents would do...

[kclynn]

Tz, Thank you for the support. We are a year into this (post diagnosis, major symptoms over the prior year, and minor symptoms for several yrs prior to that). My son is 16. I think he will cope better and do better overall if we can improve the GI troubles. He doesn't complain, he just doesn't eat. Partly he gets reflux and nausea when he eats, and partly I wonder if he is not eating to avoid symptoms, now.

PetuniasMom, Sorry to hear she isn't doing as well. Our kids sure are up and down. I noticed my son seems to have symptoms in groups and cycles and now we are recycling :} His myclonic movements are 95% improved (clonidine that he started a month ago, maybe?) I hope it lasts. He still tremors some but that is better as well. His flushing episodes are better as well, and he doesn't come out of the bathroom quite as wiped out either all the time, waking up with flushes and massive sweating not so much either, still happens, just not so much, so I wonder if the Clonidine is helping all of that as well. If we can get this nausea and ibs stuff at least improved, it will make a difference for him. When you first start down this road you hope there will be something that will help everything, but we pretty quickly found out it doesn't work that way. When you can't stand up, walk, total loss of balance, that is what you work on and the GI stuff has had to wait. Hopefully now we can get this figured out.