Home › Forums › Infant Reflux Information › Medicines › I need your help
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April 11, 2008 at 12:25 pm #50216
Anonymous
InactiveI need your help.
We live in Mississauga, Ontario. My son has also reflux problems and development delay due to late findings about reflux.
I was complaining ped. since he was six month old, and we had poor weight gain problem…night crying..colic…what not.. never listend.. and now at 8 month she started observing and at 9 month…we found both development delays and serve reflux.
He is right now on domperidone and novo-rainidine and not improved yet. He had also food alergy and one of the main was dairy. We did try eliminating some of the food. But then his achema and stomuch pain didn’t improve, we have tried by eliminting all the food and introdce one by one.
Now our diatian have concerned that he is already on very poor weight gain and not eating enough, how we can achieve the weight gain and development delay.
We are waiting for GI and G-tube at sick kids and wait time is so much. Meanwhile, I don’t know what would be options
Any fellow canadian, please help us.
April 12, 2008 at 8:42 am #50234InactiveHi there.
I’m also in Toronto, so hopefully I can offer you some advise. First, it would help to get a bit more information about your son: his symptoms, when you first noticed issues, any feeding issues, what types of developmental delays, how much of each medication, any tests he’s had done, his age, his weight, and what he eats in a typical day.Based on the information you’ve given, here’s what I can suggest:I’m not sure if you have a current GI who has reffered you to sick kids, or if it’s your pediatrician. Either way, I’d have that doctor ask to put you on the cancellation list. This is something that only the doctor can do. We had a 6 month wait for my daughter’s appointment to see a GI at sick kids for evaluation for a feeding tube and further testing. It was a very long wait. If your doctor won’t do it, call the office yourself and ask if they will put you on the cancellation list or what you should do in the meantime. When is your appointment? Who are you going to see? If the appointment is too far away and you can’t wait, then you can always take him to the ER at sick kids, and maybe they will admit him. That way you bypass the wait for appointments and tests and have tests done quickly as an inpatient. The disadvantage is that they might not admit you, and if they do, you have to stay in the hospital.What kind of testing did your son have done? How did they diagnose him with a food allergy? What is he drinking- formula or breast milk? If it’s breast milk, have you done an elimination diet? If it’s formula, has he tried neocate? What is your dietician suggesting to increase his caloric intake? There are supplements that you can add to food to increase his calories.If he still has excema then I’d wonder if you should consider stopping solids again, but I don’t know much about it.Is your dietician from CCAC (home care)? If so, then I’d ask her to refer you for PT/OT/ST for evaluation of his delays. They can offer him treatment in your home to help get him back on track. If your dietician is not from the CCAC, then look up the number for your local CCAC and call and self-refer. You don’t need a doctor’s referral. Just tell them the problem and they’ll get the people to assess him.Does he have feeding problems? Does he refuse eating/drinking? Arch his back or cry when presented with food? If so, then he may have a feeding aversion. My daughter had this. I notice that you’re on domperidone and ranitidine (zantac). I find that babies with severe refux often need a PPI like prevacid. Ask your doc for the prevacid FASTabs. Your ped can prescribe this. Check out http://www.marci-kids.com for more info about PPIs and dosing. I would personally try for a dose on the higher side, though I suspect that if your doc hasn’t prescribed one yet, he’s probably old school and will give a low dose. The dose has to be high enough to see an improvement. It also needs to be given on an empty stomach and followed up with a meal 30-45 minutes later.What testing did they do to diagnose the “severe reflux”? I would certainly talk to your doc about doing all the appropriate testing before a feeding tube, if possible. I’d want an endoscopy at the least, but that’s just my opinion.Good luck to you.April 14, 2008 at 1:12 pm #50302InactiveHi Lori,
Thanks for helping out, I am feeling so much relief. Let me answer you one by one.
I need help. My son is getting delayed and delayed without eating and diagnosis.
We had feeding issues since he was 3-4 month old while I was breastfeeding and doctor have asked me to eat less spicy food etc., I have done that still he didn’t recover. We were giving him 1 feed with formula, so we didn’t notice it could be formula.
My pediatrician was able to give appointment only once in month, even when I was asking I need you to see frequently, he is not feeding well.
He was 3.4 kg when he was born, and he was gaining weight and no problem until he was 5 month old. He was 6.0kg at 5 month and then his weight incremental was low. He never lost any weight, so initially when I was complaining my pediatrician was only focused on low weight gain and she have given us Nestle gentle ease formula and then he was worst on that formula then she had put us back again on Enfamil and told us to weight for another month.
Then at 7 month he was out of the chart for weight and then she told us lets see how his development, may be he will be thin person etc…
But I was complaining that he wasn’t sleeping well, he cry for gas and colic ..and doc was recommending always .. lets see after month. Our doc is doing some research at credit valley, so I never get appointment other than 2-3 week and all appointment ended in let’s wait.. she order some basic test and then wait for 1 month.
The I started complaining he is 8 month old and not seating yet, and doc said..lets do various test in blood. and we waited another 2 week. Blood result was normal, other than he have iron deficncay, and my pediatrician first time showed big concern that he is delayed. I was complain since he was 6 month, but then I got answer wait..some babies are different.
At 8.3 month we got referral at credit valley for second opinion and mean time our ped have told us..i had refereed you at sick kid for g-tube because we need to increase his weight. He is only 7.0 kg and 9 months old. Means in last 3-4 month didn’t gain much.
Credit valley neo-natal follow up clinic have given us OT and other help while we are waiting for PEP start infant development program.
Credit valley ped had also given us MRI follow up and do GI assessment at sick kid when we go for tube.
We also have diatian help us..and diatian had found lots of food allergy, because he have so much eczema.. she have put us on nutragim and started one by one solid food again.
But he is still not improving and only 7.4 kg and now he is 11 month old..just seating nothing else.
We go to OT and she is telling us, he is trying but he don’t have energy so work with diatian .. Diatian give me diet chart, but he can not eat that much. He have also trouble eating more than 4 oz milk.. so I hve to wait another 2 hour to give him anything else. He cant eat all together deiatina have recommended food.
The I have complained to diatina, and she has asked to concern with doctor, because he has to eat to gain weight. Meanwhile, we have stoped all food.. only rice cereal and milk and he had bit improved in weight gain and in his responses ..but diatian concern is he need to still eat ..for his development.
I told my ped and and she stated medication, that I told you.. and she told us wait for Pediatric GI at sick kids.. which is we don’t know how long.
We have so much concern with his development delay, he is very leathergic, so feeling helpless..
I go to diatian, she recommend this much to eat for normal development and he can’t and when complain to ped..she said us to wait ..can’t help it.
Meantime, how can i give him more energetic food.. our doc have not done any detail analysis of food aleregy .. have done very basic according to my diatian.
We don’t have done any diagnose for he reflux.. but just his symptoms like neck arching all the time, poor weight gain, bad breathing smell, his seviour achema..crying with gas and stomach pain after all the feed. Etc.
Can you please help us, here is our number 416-619-7575 or email me your contact at binalb@gmail.com
April 17, 2008 at 10:26 am #50491InactiveWe got bypass of wait and our appoitment is today at Sick kid hosptial.
They can make it if you enough scream at them, that lesson i got learn.my son is only 15 lbs.and he is 11 month old and we are waiting since 1 month ..My ped have recommended to doc to admit him, but lets see.April 17, 2008 at 10:56 am #50493InactiveGood luck. I hope your appointment goes well. Who are you seeing? My advice to you would be to ask for all the testing before agreeing to a feeding tube: endoscopy with biopsies, blood test for allergies, upper GI, swallowing evaluation done by OT or speech. I also note that your son is not on a PPI. It sounds like he has a feeding aversion like my daughter had. I would insist that he get put on a high dose of PPI, I know that they are conservative with their dosing, but that I push for the kind of dosing recommended at http://www.marci-kids.com. As for formula, if he really has allergies, which it doesn’t sound like your doc actually tested for, I would try neocate. Nutramigen won’t be enough. About taking out foods and adding them in, really it sounds like you need to get him eating. You need a good speech therapist to work on feeding. But first, you need his pain well controlled. If you are not happy with the help you have received, then you can call your local CCAC and ask for a feeding therapist to come and evaluate your son. My daughter also had developmental delays, as well as social issues, and feeding problems b/c of her reflux. It was that bad. We got referred to sick kids from our GI b/c our doctor thought that she needed a feeding tube. I refused to get a tube or even consider it until they did the appropriate testing. That was our situation though, and I felt that I could do that. I don’t know how dire your situation is with your son. The wait for the testing was long and even then they didn’t take our situation seriously. The thing is that I found that you really need to make a stink and be assertive and stand up to these doctors and tell them what you want and what you will and will not accept. It’s hard, but I also kept getting told to wait and see, until eventually we couldn’t wait anymore. I would definitely advise to get a new pediatrician. It’s important to have a pediatrician that can see you and takes your situation seriously. Please keep us posted about the appointment.
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