Posted By Posting
Oct 11, 2007
Nika 4 years - healthy and happy. Skyler 3 years - food allergies and intolerances, GER at 2 weeks, GERD at 1 year. Currently on 45mg Prevacid split dose, Reglan, Maalox X strength, and multiple respiratory meds for GERD related RAD (reactive airway disease).
He's nearly 3... it's not any easier
Skyler will be 3 in December. During these first years we have muddled through the developmental delays and all the hospitalizations (all reflux related) and Skyler can walk and run, talk better than all the other 2 year olds, he's using the toilet with very few accidents, and from all outward appearances he looks like every other almost 3 year old boy. But he still doesnt sleep through the night, theres very few foods he can tolerate without repercussions, and he spends too much time in pain (crying, whining, needing to be held or rocked, wimpering in his very light sleep, or even drooling and regurgitating, or vomiting). When he was an infant, family and doctors said he would outgrow it all by his first birthday, then when he was one they said some babies dont outgrow the symptoms by their first birthday but surely by the second. Finally, around 20 months they diagnosed GERD (and not just normal baby reflux) and decided he probably would not outgrow it, but that we would need to adapt to a new lifestyle. And so we have (we had started this "adaption" when he was 2 weeks and starting showing reflux symtoms)... limited diet, he actually had NO SOLIDS at all (strictly formula) until he was 18 months old per doctors orders. He can only eat at certain times, drink at separate certain times, he's on a whole slew of medications - his bed is inclined, his clothes are a size big (so as not to be at all constricting on his tiny body), we have monitors for temperature and humidity in his room ~ he has nothing that can retain dust in his room (no extra bedding, allergy sheets, light 100% cotton blanket, no curtains, rugs, stuffed toys or anything ~ he also has asthma that upsets his reflux). He cant play after he eats (just has to sit and play quietly at the table or watch a show) so as not to upset his reflux... his life is so limited and yet he still has pain. Its been so hard these past 3 weeks. I honestly have not been back to this PAGER site in over a year, I felt we had a good handle on things and we were doing ok ~ we still had our ups and downs, but over all things were better than his first year and a half. Now I'm back and I feel like we're starting all over. The doctors all seemed to take lest care or less action in Skylers care since they diagnosed GERD - its like this is what it is, they've identified it ans now they're done. Before that they would try to change meds or lifestyle or run tests or atleast communicate and try to come up with ideas to make Skylers life the best it could be. But now, since they diagnosed GERD, its like theyve given up and decided they cant help him. They say he's on the highest doses of the best medicines. When I ask for food ideas they have nothing but "avoid the foods hes allergic to and the ones that upset his reflux symtoms" and they have nothing to say about pain management. When I explain how uncomfortable he is and how little we all sleep, they nod politely and do nothing. We;ve switched doctors and still get the exact same results. And when he is so uncomfortable that he doesnt eat for days - or weeks (except the least amount of bites he can take to not starve) and he loses weight ~ the doctors monitor and just say if he goes down "x" amount of pounds in the next 2 weeks then he will be hospitalized and fed. He's no longer on the prescription formulas - which I think he might need because his diet is so restricted that every nutritionist feels he isnt getting adequate calories, protein, or calcium. Its frustrating feeling like he's in pain and all I can do to help is hold him... there has to be more. We've just moved to a new state - Connecticut, and the reason was to have a new set of doctors to care for Skyler and hopefully new opinions and ideas... I'm tired and stressed, I can only imagine how Skyler must feel. All the time I spend trying to comfort Skyler these past weeks is just so much time I havent spent with my daughter ~ it's just me and them, there's no "dad" with us, and I feel liek I havent spent time with her in so long. She asked me yesterda y when Skyler will be better. Its not fair that he's so uncomfortable lately that he doesnt want to go outside and play or do many of the things he loves - he just wants to sit and watch "Little Einsteins" or sleep (which he cant do without waking up very often because he's uncomfortable). What can I do to help him? Are there doctors who understand this pain?
Oct 14, 2007
jan gambino burns
Jan Gambino, M.Ed
The Reflux Mom
P.O. Box 171
Arnold, Maryland
21012 USA
Mom to Rebecca: reflux and asthma, post nissen fundo, post g tube, post FTT and Jenna: reflux, asthma and POTS.
Author of Reflux 101: A Parent's Guide to Gastroesophageal Reflux.
I have been there
Dear Skylar's Mom, I have been there. It is really awful having a child with a chronic illness. The doctors really cannot provide the support that we need. We need to find support from other parents. I would be happy to link you with a parent volunteer so you have one person for ongoing support. I wonder if the doctors have ever recommended surgery. My daughter had the surgery and it helped the reflux and asthma tremendously. I would be happy to talk with you more about this topic. Hang in there. Jan
Oct 15, 2007
hi there, been there still there. my daughter is 27 months old and has very severe reflux and fed through g tube mostly. i think our kiddos go through these cycles where they are better and than boom it starts all i think it could be one of those times right now. we hardly go out with her as well adding to her reflux she is very nauseous in the car so we can't drive 5 min without her being sick. as per to family functions join the boat. i know it's very very hard but i also believe there is light at the end of this tunnel we are going. i try to remind myself atleast we have hope there are parents who are taking care of there very sick kids and there is no hope. but we also have a right to be sad and upset as what we are going thru isn't a piece of cake either. i get very sad sometimes and think i can't take it anymore. and ya also keep in touch with all us pagers even when your son is better cause that gives hope to people like me and that is even more important.if you want to talk my chat i.d is i hope things get better actually i know they will!
Nov 04, 2007
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
See my post to you on the other side. Ellen
Check with your
doctor first!