Gi Doctor Update For My Son

[kclynn]

Good visit, not too long but Dr. seemed very good. My son is very tired of long dr. visits so not necessarily a bad thing. He said probably Gastroparesis (no surprise there). Started him on Erythromycin low dose for a couple weeks to see if it helps, if not try another med (I didn't catch the name of it) and if not then probably some tests, scope, etc..

Macks Mom and Thankful, I saw your kids have had some success with this med so I am a bit hopeful.

I asked him if he had many patients with Dysautonomia and his anwer was He has a few every year but probably more than they know because they don't generally look for it. I thought it was an interesting and honest answer. He is approaching as being caused by the flu that caused the POTS but not sure that makes any difference as it is all poorly understood anyway. My concern was he recognize my son's Dysautonomia and POTS which he clearly did, discussing with us the various workings of the sympathetic and parasympathetic nervous system in regards to intestinal issues and the autonomic nervous system.

[juliegee]

Overall great news- WHO was his doctor if you don't mind sharing. It's tough to find ped. GI's who "get" this & he may be able to help other members.

I hope he's using liquid erythromycin.... I would not use REGLAN- ever, very bad med in my opinion.

Let us know if it helps and I LOVE that he's not test happy. So many of the GI test are incredibly invasive and difficult to get through.

Julie

[kclynn]

Dr. Ding-You Li in Kansas City

I agree, my son has been through enough tests. Eventually he should improve greatly and I think this will also. In the meantime hopefully we can find something to help him feel better. And yes, it is the liquid form. We have to go get new bottles every 10 days.

A friends elderly mother was on Reglan and became very, very sick and the Dr. were not catching that it was the Reglan, she did after reading about the side effects and putting it together.

[juliegee]

Wow, every 10 days!!!! Ery-Ped lasts 30 days once mixed. My son uses the 800mg and takes a tiny dose (about 1/4 tsp) so it lasts a long time. Be sure not to do too high a dose as it will overly upset his tum and cause worsened nausea and irritation.

Yeah- I think reglan is BAD news.

Julie

[kclynn]

Hmmm... Same stuff. Thats what they said - CVS I will double check. I know they didn't have all of what we needed, just one bottle. He takes 2.5 ml 3 times a day. The Dr. said half hour b4 meals but the scrip just says 3 times a day. It is a tough one to do at school so for the next few days I think we will do half hour before eating AM and PM and just get the extra dose in right after school because hubby didn't get an extra bottle for the school (he gets out pretty early and we eat late).

How long did it take to notice a difference?

[PetuniasMom]

kcmom, I am happy for your son to have something new to try for his tummy! Right now that is something we are struggling with. A month or so ago I discussed liquid erythro with her paediatric GI, and while he was aware of its benefits, he advised me that there is a supply issue from the manufacturer, and we are unable to access it. I called about 10 pharmacies within an hour radius and they all told me the same thing. We are a border town, so the USA is about a half hour drive - I did call 2 pharmacies there as well, and they both told me the same thing. I would drive to the end of the earth to get some, she is having so much trouble right now. I hate to ask for personal information, but I would love to contact a pharmacy or find out the name of the manufacturer that supplies the pharmacy with the liquid erythro that I could pass on to our pharmacist....

[kclynn]

Not sure which border you are at. I got it from CVS, a national chain. That one did actually have to get it from another pharmacy but they said they just didn't stock it (maybe it isn't widely used). If you are near a US pharmacy - perhaps they could order it. First you have to get it to try it to see if it helps. If so, then you can figure out how to get a regular supply.

My bottle says Abbot Laboratories, North Chicago, IL, USA, 60064

Good Luck!

[Christy_D]

I hope the Erythromycin helps. Cody was on the pill form and it never did help him.

[Lenna]

Was the other medication Domperidone? That was a miracle drug for my son.

[juliegee]

"Hmmm... Same stuff. Thats what they said - CVS I will double check. I know they didn't have all of what we needed, just one bottle. He takes 2.5 ml 3 times a day. The Dr. said half hour b4 meals but the scrip just says 3 times a day. It is a tough one to do at school so for the next few days I think we will do half hour before eating AM and PM and just get the extra dose in right after school because hubby didn't get an extra bottle for the school (he gets out pretty early and we eat late).

How long did it take to notice a difference?"

_______________________________________

KCMom-

I could be wrong,but 2.5ml is 1/2 tsp. Are you sure it's 800mg? That's a pretty hefty dose- might actually irritate the tum more than help... All GI's, even excellent motility specialists seem to prescribe too high of a dose in our experience. LESS is more in this case. Mack has settled on twice a day- skipping the mid-day dose. The evening dose helps prevent AM nausea (when it's worst.) And, the AM dose gets him ready to eat breakfast.

WHEN does it work? In our experience- I've taken it too- right away. IF this is going to work, you will see results pretty quickly. Tweaking the dosage ay take a while. AND, if the dose is too high- it won't help.

Let us know if it is working. Fingers and toes crossed.

Hugs-

Julie

[kclynn]

Julie, the bottle says 200 mg per 5 ml when reconstitute, so 100 mg per dose for him. Sounds like a slightly different formulation (it isn't the EryPed) but is the Erythromycin Ethylsuccunate though.

Lenna, I can not remember and it bugs me because I am usually better about writing things down that are said.

[juliegee]

Sounds like a much lower concentration. In this case, the higher dose would be appropriate. Only if it makes his tum MORE nauseous and irritated, would I consider trying a lower dose. Is it helping???

Yeah, domperidone is really the only other GI prokinetic to try. Sadly, as far as pharmaceutical options go; those with slow GI tracts are a very neglected population Unless, things have changed, domperidone isn't even available in the US- for financial reasons- (Grrrrrrr;) BUT, widely available in the rest of the world, even offered OTC. Many Americans are forced to get it via mail order from foreign pharmacies.

[Lenna]

We actually buy Domperidone from a compounding pharmacy in Massachusetts called America's Compounding Center. http://www.accrx.com This pharmacy was highly recommended by Dan's doctor and they've been helpful to Dan in a number of ways over the past few years. Conveniently it's located just a few miles from where I live, but they'll ship anywhere. You do need a doctor's prescription. It isn't cheap - Danny takes Domperidone 3x/day, and a month's supply costs $60. But for some reason, it works better for him than the foreign stuff we ordered (which was a lot less expensive!)

[Lenna]

Oh, one more thing. Insurance won't cover it.

[juliegee]

Great news that you can get it so easily, but soooo unfair Insurance not coving it makes me furious. Dan needs it in order to eat food- uh, isn't that necessary to live??? YET, Medicaid, Medicare and most every insurance plans cover Viagra for ED (not taking about the connective tissue variant ) Grrrrrrrrrrrrrr.

[songcanary]

Julie,

Your Viagra comment? I hear that BIG TIME. I mean, seriously...

[Lenna]

Well, I think it's because it's actually not FDA approved...

[juliegee]

Lenna-

The background on that MAY want to make you FIGHT to get it approved. The reason that it's not FDA approved is because the copyright/ licensing on domperidone expired and generic is widely available now. The drug manufacturers in the US didn't feel that it would be financially beneficial to seek FDA approval for such a small kick-back. Too bad for the US patients who literally NEED it to be able to eat food.

the safety of this drug is WELL established. It was originally given to nursing mothers as it helped with lactation, in mothers who had a scant milk supply. It is OTC in most countries- not dangerous in the least; just not lucrative Welcome to US healthcare. Grrrrrrrrrr.

It just infuriates me as there are NO other alternatives, aside from erythromycin- which doesn't work for everyone. My son had such severe symptoms from reglan. His hands still shake to this day. HE (my laid-back, mild mannered son ) wants to sue the doc who repeatedly told him it was completely safe & his symptoms had NOTHING to do with it. Now, I hear lawyers on TV, looking for patients like him. Grrrrrrrrrrr.

Patients with poor GI motility have VERY few pharmacological options in the US and subsequently many end up dependent on unnecessary parenteral tube feedings that run the risk of severe complications, such as life-threatening infections, etc. Infuriating. Rant complete- sorry

Julie

[Lenna]

Don't apologize for ranting, Julie!! It's totally justified!

[POTSMama]

Julie - - I am SO with you on this. We need a better healthcare system in the U.S. - it clearly isn't working.

And don't get me started on insurance companies. My Type I diabetic, insulin-dependent husband is currently fighting with the insurance company because they only want to pay for enough insulin to cover 3/4 of a month -- um, excuse me? He can't LIVE without insulin, but they are telling him that they won't pay for the whole month even though they've covered this amount for the last 20 years for him? We can't figure out what they are thinking, but my husband is going to have to have our GP call and straighten it out. I can't believe how many hours we end up on the phone with the insurance company screwing things up these days, yet we are paying more out of pocket than we ever have. I'm sure we'll get it adjusted, but it's very frustrating.

Yes, covering Viagra but not something intended to help someone live IS ludicrous. Part of my current job is in Regulatory, filing paperwork with the FDA for a medical device company, and this work gets, well, interesting. I'll just say it's not always logical in the process or outcome, but I won't go into details. But even though we have some of the best medical centers in the U.S., and a Regulatory agency (U.S. FDA) that tries very hard to protect us, some things just fall between the cracks and don't work well, and some things depend on the luck of the draw in the reviewer and their biases.

In any case, this is the kind of thing to fight, Julie, by writing your congressman, as the senate can have huge impacts on laws and the FDA. Although often a small fight like this seems to get lost in the shuffle because there are just not enough of us.

.

[kclynn]

Cautiously optimistic - my son says he "thinks" it is helping, at least with the nausea. He still has trouble with no appetite. I think maybe a medical anorexia as well from constantly feeling nauseous whenever he ate, then it turns into nausea whenever he thinks of eating because he knows it will make him sick.

Mack's Mom our bottle does say it is only good for 10 days but when I talked to the pharmacist today, she said if he is going to be on it long term then she will figure out how to give us a months worth and we can mix our own every 10 days.

[juliegee]

Carol, Interesting to hear your input from an insider. It is infuriating. Last year, I was having such severe Reynauds, that I was in danger of losing fingers/toes. I couldn't tolerate any treatment, but my rheumy wanted me to try Viagra. Guess what? NOT covered by the insurance company. I was actually advised to have my husband get a prescription so I could KEEP my body parts Let's see, your husband can suffer the life threatening damage of sky-high glucose, Lenna's son can starve to death, and I can lose my digits (according to the insurance industry) BUT men with ED are covered.... WHO makes the decisions, hmmm?

KC, glad to hear it is helping- but clearly not enough. The symptoms you are describing ARE those of poor motility. I wonder if it's worth trying Ery-Ped 400 or 800 mg at a very low dose OR domperidone. My heart breaks for you. I remember watching my son starve for the same reason. I bet a local compounding pharmacy can make the domperidone OR you can order it from overseas. Look into which will be cheaper. One thing I know, it WON"T be covered by your insurance. Grrrrrrrrrr.

Hugs-

Julie

[kclynn]

Adding to the rant - MY Dr. prescribed me and ADHD med for Chronic Fatigue Syndrome last week. Insurance denied it - Not covered for that diagnosis $200 a month I can think of a lot of meds they DO cover off label though....