Saturday, July 25, 2009 Jeanette asks

Q: What other treatment options for GERD - Nexium and life style changes not working!

My son is 26 and has lots of medical issues. Severe Cerebral palsy, Hydrocephalus, Severe sleep apnea and now GERD!

He had a check up in February and a blood count of 12. He was off colour and we couldn't work out what was wrong. By May I admitted him to hospital as he couldn't speak clearly was chocking on food had a cough for months a lump in his throat when he swallowed and was very drowsy. They did a blood count and it was only 6, no wonder he was so ill! They did blood transfussions and an endoscopy which showed esophagitis.

He was given Nexium one 40mg tablet a day and ferrous sulphate (iron tablets) 200mg three times a day.

We have changed his diet, meal times and portion sizes too.

But for the past two days he has had his symptoms return ; belching, odd taste in his mouth and some chest pains.

The Dr's want to reduce the Nexium to 20mg a day next week.

I don't know what to do, should I be worried? Or do we just need to work out some different medications or doses?

Please any advice would be grately appreciated.

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Answers (1)

Jan Gambino, Health Guide

7/26/09 8:07am

Hello Jeanette,

I have found that when there are complex medical issues, the reflux often goes to the bottom of the worry list. Often it is quietly lurking, causing a whole host of issues. Good for you advocating for your son and being his voice so the GERD could be diagnosed and treated.

The main treatments for GERD include:

Diet: reducing foods that trigger heartburn and avoiding high fat/fried foods that digest slowly and cause discomfort.

Elevating the Bed: Is he under the care of a pulmonologist for the apnea? You might need to determine the best sleep position. Often the recommendation is to elevate the head of the bed with a wedge. Best to coordinate with the pulmonologist.

Medication: It sounds like the doctor started with a high dose and wants to taper down to a lower as the esophagus heals. A repeat endoscopy may be the best way to judge the amount of healing that has taken place. Otherwise, it is based on symptoms, discomfort, the ability to eat and drink and overall health status.

Long Term: With the underlying health conditions (CP, apnea), it is possible that a long term solution to manage the reflux will involve surgery. Ask the doctor if surgery would be an option for your son and compare the options you have (medication/lifestyle) and whether surgery would improve his quality of life.

Let me know your thoughts.

Jan

Jeanette

7/27/09 10:25am

Thanks Jan

I'm really grateful for your input. Jamie does sleep with his head elevated anyway as this has always been the most comfortable position for him due to his sleep apnea and cerebral palsy.

He does see a pulmonologist for the apnea, however we have had big problems with the Cpap treatment because we can't find a mask that fits his face. We have even travelled to Brussels to have one made for him but due to it's design it has raised issues about his safety at night, as he wouldn't be able to remove the mask if he was sick. Another DR suggested a tracheotomy however that would just cause other problems and unless it was absolutely necessary I won't consider it for the time being. There never seems to be an easy solution for Jamie's problems but we won't give up trying! We think we may have found a new very large mask made in Germany that we hope will fit, and we pick it up next week so fingers crossed.

Anyway back to the GERD. Another surgery seems terrifying, Jamie has has so many. He doesn't do well with anaesthetics, and has to spend time in the ICU afterwards because of the apnea. But if we can't get this under control we may have no option. As I'm new to all this I will have to do more research about the possible surgical solutions, but from what I've read so far they don't seem to be very successful.

I bought some Gaviscon (don't know if you have that in the US, it's an over the counter antacid) and that seems to have had a positive result for now. He's feeling much better.

Thanks again for your help Jan.

All the best Jeanette

stwj.suze

8/11/09 10:25am

Jeanette

I am certainly no medical expert - just a sufferer who has been fortunate to see some recovery from reflux. Can your son stomach honey? I have a teaspoon before sleeping and when the pain is strong. It coats the oesophagus and gives comfort from pain. (It also does lots of other technical good stuff down in your tummy like being antibacterial and helps digestion.) Manuka honey, factor 10+ is excellent - but expensive (about £10 a jar). A red apple settles my stomach after a meal and I know it works for other people too.

I hope your son finds comfort soon

Best wishes

Suze

Jeanette

8/12/09 9:51am

Thanks Suze,

I give Jamie his apple a day! and although I can't actually be sure it helps it certainly can't hurt. But I will give the honey a try and see what that does.

Jamie seems to be doing much better at the moment thank goodness. He just has the odd day when the reflux flairs up and I'm trying to work out what the triggers may have been on each occation.

Thanks for your kind help

Jeanette

stwj.suze

8/12/09 10:33am

Hi Jeanette

I have kept a pain and food diary for almost a year now and I now know which foods I have to steer clear from. Everyone has their unusual foods (like peaches really hurt me, tomatoes terrify me and pasta is a no no!).

If you want to pick my brains in order to help your son be more comfortable, please do! I have been obsessed with fighting reflux since I was ill last year. I have tried everything and seem to be getting some decent recovery and handle on things.

Gaviscon is incredibly soothing, and sipping water to wash the acid down the oesophagus makes sense. I am permanently sipping away.

Wishing you and your son all the best.

Suze

Q: What other treatment options for GERD - Nexium and life style changes not working!

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