As a last resort, the GI wants us to try nexium. Maiya is 15 months old and refuses all purees. I tried dissolving the tablets in water, and it all got stuck in the syringe. I tried adding a bit of bicarb, it helped me get he granules out and i was able to pick away the pink thick tablet coating. It tastes so bad, maiya will never keep it down as she gags and gags. Any ideas on how i can give it to her will be appreciated.


desperate mom johanne

johanne, I haven't forgotten about you. I am trying to search on giving nexium the way you are and I am not having much luck. I will get back to u though
Graham Ph.C.

thank you


the tablet tastes awful- i wont be able to get it in her. Do they make 20 mg capsules?


thank you

johanne

johanne, I guess the best I can come up with is that nexium is kind of an odd choice in your position because of the difficulty in administering it. Just to get back to square one with you, is the zantac being given in the evening or at least supper? Did the prevacid just not work at all and was it given in conjunction with the zantac?
Graham PhC.

what a long history we have had

diagnosed at 4 months-given zantac and domperidone, ended up in the ER after she would not stop screaming with bellyaches for 18 hours
I stopped the domperidone and gave just zantac: complete irritability and TOTAL insomnia (did not think a baby could stay up for days)!

hen losec: we stayed on that for over 3 months: green skin, nausea, dizziness +++, constipation, and still refluxing like mad

Then prevacid since then: lots of dizziness, green at times, nausea but beautiful stools with bellyaches that are usually ok with simethicone. Still up 12-15 times a night, refluxing

Just to let you know- she refluxed 219 times in 24 hours during the ph probe- many episodes with a pH of 1.1 and episodes lasting as long as 17 minutes- thus severe reflux


then we did erythromycin : boy what bellyaches- maybe helped the reflux a bit, but bellyaches made it impossible

then we did the milk scan test which revealed no delayed gastric emptying-but docs still wanted to try domperidone again- so we did - i gave only 25 % of the prescribed dose- howling with belly aches and no improvement in reflux


Finally at twelve months of age, i had to beg for a trial of zantac plus the PPI, as she refused all solids, had no more voice, severe spasms, sandifers and esophagitis. SHe added zantac. So she gets her PPI BID (they said 30 min before meals but i had to give it 60- as it works best. I give her Prevacid at 4:00 (she has not eaten since 1) and then dinner at 5:00. Then around 6:30 I give her simethicone and tylenol (160 mg) because zantac gives her wicked headaches). Then 30 mg of zantac before bed

She is better- getting up only 4-8 times a night. The zantac has helped as it makes her thrash alot less- when she sleeps she is more peaceful. I have to give her lots of maalox- usually 12 to 15 ml a night
The combo has helped with her eating- she is an eating machine now- not perfect, but quite good and the spasms are a lot less, as well as the improved voice

Things are not great at night- which is why at 15 months she wants us to try nexium. I am concerned as it is just an isomer of losec, and losec was not our friend

I have a question- out of nowhere she has developped horrific gas. How much simethicone can i give. She is a big girl at 27 pounds



Thanks for all your concern

Any input is a Godsend

johanne

johanne, I guess my first question is how did you get Maiya to smile in these 2 pictures after all of that? That last regimen with the zantac at bed and ppi twice daily is normally the best way to go with antacid when needed. The simethicone for <2 yrs is 20 mg 4 times daily and goes to double that over 2 yrs. It's cases like yours that convince me that GERD in children is caused by something totally different from what we are looking at with treatments. I guess the nexium could be tried. The company recommends dissolving the tablet in water only and when the tablet disintegrates the water and pellets are consumed within 30 minutes. Rinse the glass with more water and give that too. This is usually enough to give a dose. Give 1 hour before food.
What kind of food is she taking in?
Graham Ph.C.

One month ago she would not eat anything. I spent 10 months trying all kinds of purees. She now eats pork tenderloin, meatloaf, peas , carrots , corn, etc etc etc. SHe still hates most purees- very strong gagging. Maiya has come a long way. She used to scream just at the sight of the high chair (and of the bedroom) as she associated eating and sleeping with pain.

Here is why maiya has done so welll. She is an extremely severe reflux case- and the Gi said she should have been tube fed. I am an OT with a strong science-premed background

Here are my feelings as to why she has done so well :
Breast milk!!! SHe had an aversion but enjoyed the cuddling- i also never knew how many ounces she had so i was never pushy- she was the boss. Also, it is digested much beter. When i had to thicken, due to respiratory issues, she only tolerated organic cereal. I have spent a fortune- all purees, foods, etc are organic- she liked only the taste of those (for example, all fruit purees have ascorbic acid- most organics dont)

She would not eat and spasmed constantly. Then the pharmacist on duty one night confided to me - if it were my kid, i would not flavor. We stopped flavoring the PPI and zantac (flavorX)- and immediately she started eating. The esophagitis got much much better!

I have to ask you this- i wont hold you to it. I wonder- osteopaths talk about a vagal nerve issue. I thought the Lower esophageal immaturity was more of a parasympathetic issue, not central nervous issue. I find maiya to be very nervous, sensitive to noise, etc etc. The doc calls this a disregulation of the nervous system.

What do you mean by caused by something else? She was milk sensitive too- i think for the next baby (if we have one) i will not have milk products during the last trimester. I also did accupuncture for severe nausea- i might forego that too.


Do you have any ideas, suspicions. No one wants to say anything. I think C sections are a factor too- but many moms got offended with my thinking that. I refused all meds for 26 hours. I was in horrific pain they finally forced the epidural, pitocin on me and then an emergency C section after 36 hours of horrible pain and then 3 hours of pushing for nothing. Also, it seems, manyof us have sever nausea during pregnancy. I wonder, could it be an environmental toxin? I dont think so but some allergists believe this.


I know descent into the vaginal canal helps the lungs mature (is it a corticosteroid or something) and docs will deliver babies on different gestational ages depending if they will be C section or not. I am suspicious of the same thing being true for Lower esophageal functionning


Just food for thought.........



Well graham, she did very well last night. The PPI zantac combo seems to be working after three months- not perfect but OK

She is a sweet child- suffers terribly, but we have catered to her EVERY need 24 hours a day- the GI says that has made a difference. We have made her into quite the little spoiled princess, but the minute she cries, she refluxes horribly.


Thanks for any input and all of your help. It would be so interesting to do research on this condition. I do believe that reflux is a mix of many different conditions all labelled as the same. Many get better around 7-9 months, and then there is the horrific , resistant to treatment kind that we were dealt with. Maybe that is the difference between the one premies get, and the genetic kind that i think we have


nice chatting


oops- another quesion. We cant get mylanta in quebec. Gaviscon constipates and maalox has aluminium. The night time maalox has been wonderful- it has an alginate in it- making it soo thick. Is calcium carbonate ok to give to infants? The GI said yes, but she is not too knowledgeable. ( SHe is the one who gave me nexium, not knowing if it dissolved in water, how i could admininister it, and told me to give half a tab a day, but not knowing if the tab would stay good for 24 hours. You dont need to answer that- maiya cant stand the taste so we wont do the losec isomer for now)

johanne

johanne, I guess I could speculate on other causes of gerd in kids but rather than use kids at home as lab experiments I'll leave the science to the studies being done. One thing is for sure, more studies have to be done. Although the vagus nerve has lots of GI involvement, who knows right now? I sometimes think that some of these kids have a food allergy to something. The same drugs are used over and over with sometimes great results and sometimes no results, the PPI's , zantac, antacids and motillity agents (incl erthromycin) are 99.9% of what is used. Maybe in 10 years time some study will reveal some new way of treating with an existing drug.
How about diovol? The calcium carbonate is good (up to 800 mg rdi total each day combined with other dietary sources). I wouldn't be too hard on the gi dr. They are experts in the disease mangagement field and sometimes we are left to find the best way to get the drug into the pt. They are right in the calcium carbonate though.
Hope I was some help to you
Graham Ph.C.