Tuesday, December 01, 2009 Sam Chhatrala asks

Q: Should a GERD/Acid Reflux child continue to use megace & Nexium for long period -more than 16 months

We are really confused and seriously need help.

Our son, Raj, who is 6 years old, has been on Megace and Nexium for the past 15 months. We have gradually reduced Megace

from 4ml/day peak to 2ml/day past August, and further reduced to 1ml/day present dosage. Raj had gained 12 lb, but has

given up 3lb in last few months with the reduction of Megace.

Let me give you his short history. He had been a spitty baby. Endo at 18 month revealed sore esophagus and dr dr.

categorized it as GERD/Acid Reflux. We tried Zantac but it didn't work. Then we tried

Nexium, 20mg tablet once a day - that worked great. He used it for few weeks then, and has been on and off since then.

Mean we would give him for few days/weeks when he got sick and threw up couple of days in a row (which is usually the

case when he has cold etc). Raj was growing ok -5 to 10 percentile on consistent base. He was 36lb on his 5th birthday

(May 2008). Then he reduced his food intake - without any visible sickness and never complained of any pain - just said

he wasn't hungry. The second Endoscopy of his life (Sept 2008) revealed stomache ulcer; all other lab test and tissue

biopsy came negative. GI physician prescribed Megace 4ml/day (which we gradually increased from 2ml to 4ml because 4ml

on first 2 days he threw up because he ate so much food). Raj gained good weight to 48lb peak this past July. Since

then we have tried to reduce the Megace and we were happy that he was at least sustaining the weight with the reduction

of Megace. But last few weeks, he is giving up the weight gain. He is at 45lb now.

We have a visit schedueled with GI next couple of days. We know what the GI will recommend - increase Megace back to 4ml

level as he strongly indicated during last visit that he is in strong favor of Megace because it works better than others

medicine options. Plus, the doctor is is against antihistamine mainly because Raj's Acid Reflux issues. But we are very

worried about the side effects of Megace; we want to make sure he grows up as a boy, not a girl - as well as avascular

necrosis!! Plus, Raj seem to be lethargic and not in a mood to do much physical activities!!

Please advice us to the best of you can on what you would recommend.

We need help!

Sincerely,

Sam.

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Answers (1)

Jan Gambino, Health Guide

12/ 1/09 10:20pm

Hello Sam,

It is good that you are thinking about the appointment with the gastroenterologist and getting a list of questions together. I am not familiar with the use of Megace for children with GERD. That is not to say that it does not occur. It is just not common. I would be concerned about the long term use of this medication too. Please ask the doctor why your son is having such a difficult time gaining weight. I wonder if your son has been tested for other conditions that make it difficult for him to absorb nutrients or if his diet is very limited due to the GERD. Perhaps a high calorie diet or a special nutritional drink could be used. A dietician may be able to help you analyze his diet and see if he is taking in enough calories and nutrients and suggest ways to increase calories, add vitamins or a nutritional drink to his daily intake so that he can gain weight without the need for the medication.

Some children with GERD have special feeding issues that need a feeding specialist or a feeding clinic. A speech language pathologist with training in feeding issues may be needed. However, a feeding clinic has the advantage of a team of specialists: gi doctor, speech language pathologist, behavioral therapist, dietician and occupational therapist all working together to look at the feeding concerns.

I hope you get some answers when you go to the appt. Let me know if you need further assistance before the visit and we can chat some more. I hope you will also let us know what you find out at the appointment.

Best wishes,

Jan Gambino

The Reflux Mom

Stephanie, Health Guide

12/ 2/09 7:55pm

Jan - I'm glad you posted. You have some great suggestions. I was reading up on the Megace because it's unfamiliar to me as well. I do know that I have had a lot of children increase calories by adding high fat things such as heavy cream, butter, avocado etc to each bite they eat in order to increase calories without having to increase quantity. I know there's also a liquid substance that can be added to just about anything. I honestly can't remember what it's called nor can I find it but you're right - a trip to a nutritionist or a feeding clinic is an excellent idea.

Stephanie

Sam Chhatrala

12/ 7/09 5:43pm

Jan, Stephanie, thank you both for taking time to reply. We did visit the GI, and came out feeling better with the new plan: get the kid off of all drugs soon as we can. First, we are going to replace Megastrol (currently at 1ml/day) with periactin -which has less side effects on the long run. The plan is to give as little of new medicine as needed, to sustain the weight for next few weeks. If that works fine, then also reduce Nexium to alternate days, and then further reduction or change to different ones.

In the past, we have tried heavy calories diet (boost etc) but didn't have much success. With heavy calory food/drink, he would simply increase the time distance between the meals.

Hi doctor had suggested speech therapy a while back. We didn't think that would have helped. Looking back, we now realize that we should have gone that route. Seems like mental fear of throwing up is still there. The intensity of fear is high during cold/sickness but much less when megace/periactin is making him hungry. He could go more than a month without throwing up when all is well.

We greatly appreciate your input. Will update this post in few weeks.

Thank You,

Sam.

Sam Chhatrala

12/ 7/09 5:46pm

Jan, I greatly appreciate you taking time to write lengthy response. Please see comment under Stephanie's reply.

Jan Gambino, Health Guide

12/ 8/09 6:14am

Hello Sam, I am so glad you and the doctor have a new plan of action for treating Raj's GERD. I am familiar with Periactin and it is more typically used with children to increase appetite.

A speech language pathologist with training in helping children with feeding issues is best. Did the doctor give you a referral? Often a gastroenterologist will know a feeding specialist or feeding clinic in your area. I have a list of feeding clinics that I know of on my website at www.refluxmom.com. Let me know if you need further assistance. I have heard of many families having great success with working on feeding issues and GERD when there is a team approach. The doctor deals with the medical issues related to GERD and the feeding specialists help with the mechanics of eating and overcoming any barriers such as fear and learned behavior. My daughter had a lot of feeding issues from GERD and it was a slow and steady process of learning to eat without discomfort and fear. She only ate a few foods and each meal was so tiny-just a bite here and a bite there. Now she eats much better. So take it slow and steady.

Best wishes,

Jan

Q: Should a GERD/Acid Reflux child continue to use megace & Nexium for long period -more than 16 months

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