I can’t believe we are struggling again!

[Anonymous]

We were doing so great. WE tried weaning off prevacid again but that didn’t work. I was disappointed but what can you do. I was just happy he was doing so wonderfully. We are weaning from bf to soy milk and that seemed to be going good. He has been on the soy for about 3 wks now. He has been so happy and even sleeping better. Then his chronic nasal congestion seemed to get worse or rather his meds seemed to stop helping. So he began waking more at night. We had allergy testing done a few weeks ago and he tested neg for everything. (doc warned us he could still have gastro response which would not show up on testing). He suggested if we are still congested and mouth breathing, go to ENT. I really didn’t want to but his congestion is becoming bothersome so we are going tomorrow.

Any who……..last night as I was nursing him to sleep, I noticed he was swallowing alot. I figured it was all the post nasal gunk. But he kept swallowing, one after the other after the other. Then he made a wretching sound. He has never done that. then he started coughing. This went on for a couple of hours. It settled then flared again though not as bad. It was a very sleepless night for us all.

So of course I am running through the million things that could have caused this and praying this was just one really bad night, not to repeat again. I have been giving him more things with hidden dairy, could it be the soy just now catching up with him (I know proteins can build up but can they just all of a sudden BAM have a response after 3 wks. I assumed it would be more gradual or there would be other signs. Maybe there have been adn I have missed them?), are we just doomed to lead a miserable life with relfux forever, Was it the huge amount of almonds I ate? did he drink too much before bed, did he drink his brother’s milk when I wasn’t looking, did the drainage from the cold set him off, the list goes on and on. I am so sick of all of this. I am sick of doctor’s appts that help with nothing. I tired of wondering “could it be” …..fill in the blank. I know it could be worse but this just feels so defeating. I truly feel like there is no one who can help us. I dont’ want to go back to GI. They didn’t like me too well and the feeling is mutual. The allergist was a waste of my time, the ENT probably will be as well. Matthew is 14 mths old!!! This is not suppose to still be happening!!!!! I just keep thinking what are the odds? Most kids have outgrown reflux by now. I know not all but most. Why can’t we be most kids? Most kids have outgrown dairy issues by age one. Of course I am not even sure we have a dairy issue. Who knows!!!!!! I am a very black and white person and all this gray is killing me. there is never a clear cut answer.

Sorry to off on a rant. I am so blue, so defeated, and tired. Maybe I just need a good nap. Matthew is sleeping now so I hope he will wake and feel better. I haven’t noticed any reflux this morning. This just makes no sense!

[Anonymous]

Donna, I wish I had answers for you. I’m just so sorry that you are having a hard time again (still). I know how frustrating it is. Hang on to the knowledge that it does get better, though it’s definitely a long and rough road getting there. I wish you easier times ahead.

[Anonymous]

Hey Donna,

I just wanted to add a few things b/c we went through similar things with Emma. This was all post-fundo, mind you! She was wretchging a lot & choking tons (she does aspirate, but this was more than usual). We saw an allergist at the time (same deal, neg on tests). He DID put her on Nasonex which has helped some. Also, she is on Periactin & this has helped Emma’s congestion A LOT! This, in turn, helped most of her choking.

She sees an ENT regularly as well. She’s getting her 2nd set of tubes next week & possibly an adenoidectomy. Some kiddos’ adenoids or tonsils can be enlarged, which makes things worse. An ENT can rule this out.

The combo or Nasonex, Periactin, lots of Saline has helped her congestion. She was also dx with asthma, so when we start hearing the wheezy cough, we start doing breathing treatments. This avoids an all-out cold, some of the time at least.

Even with Emma’s fundo, she had to go back on Prevacid for wretching & other ‘reflux-like’ symptoms. She is almost 2. I know your frustration…we were told Emma would be off Neocate & done with Reflux by 6 mos, then 12 mos, now they no longer say when we may see changes. She is the exception & more than likely your son just needs his congestion helped which in turn will help his reflux. He may just need Prevacid for a few more month.

I would really review his diet as this could have upset things further. It could be very helpful seeing the ENT as well. GOOD LUCK!

[hellbennt]

I think the only way to rule out if it’s the soy is to take it away from his diet and see if the congestion clears up… it’s so hard, all of this trial & error!

[Anonymous]

Thanks for the support 🙂 Last night was better from a reflux stand point. I did hear some swallowing but with all the gunk in his nose, to be expected. None of the crazy wretching business, Thank you God!

So we went to ENT today and it was actually helpful! It has been a long time since I have said that about a doc appt! He told me that the antihistamine/decon we had been on is not for long term use and stops working after about 2 wks. would have been nice to know since we have been using them since January and just couldn’t figure out why they weren’t working. His ped even switched meds after a few weeks but to one that works in the same way. At least I know I am not crazy, they were working then stopped. any who, he had some good suggestions on figuring out what the deal is with the stuffy nose.

I cut out all hidden dairy for now. I guess since last night went better, it isn’t the soy. Seems like if that was it, it would have continued to bother him. His cold is getting rather nasty and now he has a horribly sounding cough. It sounded a little croupy but the doc thought he sounded ok. Hopefully we will get that nose cleared up, get back to sleeping, and then, dare I hope get off prevacid 🙂

[Anonymous]

Not to sound negative, but WHO outgrows reflux? Do doctors say this? Have you heard of others? I’m just confused because I read that remark a lot on this site. I was told that my son would have reflux for the rest of his life by my son’s docs. I’m just confused, that’s all.

My promise to myself that I would not wean my son off of meds until I could sit down and actually hold a conversation with him, and have him tell me that the acid is not bothering him.

Dairy is very hard to digest. Also, I have reflux and it makes me very phlemy – so much it’s hard to swallow. Hears a site explaining acidophilus, it is a pro-biotic that help you with digestion. PH balance is very important, if the stomach acids are too far one way, the acidophilus can bring it back to the levels needed for healthy digestion. It can also help your immune system. http://www.healthscout.com/ency/68/7/main.html#QuestionsToAs kYourDoctorAboutAcidophilus

Have you read my post about Laryngomalacia and Tracheomalacia under the RESPITORY topic. I’m begining to think that all children with massive reflux have one or both of these to a certain extent. That will explain the croupy cough. The rattle of tracheomalacia is OFTEN misdiagnosed as croup. One quick note, most doctors don’t bother with this diagnosis since MOST babies outgrow the malacias by the time they are 2 years old. My son still has the croupy cough that turns heads even when he’s not sick.

[Anonymous]

Marsha, every doc we’ve seen has said that over 90 percent of children do outgrow reflux by 18 months. These children are mostly ones where the underlying cause is an immature sphincter with nothing else found to be wrong, I’ve been told. Apparently this is supported in the literature on reflux.

I personally know 6 babies who had reflux (not from this site), and every single one of them outgrew their reflux… some at 6 months, some at 9, and one not until 11.5 months. The last one was a sudden spontaneous recovery (he woke up one morning and it was gone. prior to that he spit up over 20 times a day and was on losec, but no other complications). All of the children I speak about also had uncomplicated reflux, meaning none of them developed feeding aversions or sleep difficulties; 2 were on losec, 2 were on zantac, and one was also on domperidone, while the others were happy spitters that did not need any meds.

Other than from this site, I do not know of any children who have had reflux beyond a year, and certainly don’t know of any personally who have significant eating and sleeping problems like my child. So in that way, persistent reflux seems more the exception then the rule. In fact, from all the sites I’ve looked at, most children do seem to outgrow it. I don’t know why your doc has told you otherwise, and I hope that they are wrong.

[Anonymous]

Wow Donna, I really feel for you!! I’ve had many days feeling the EXACT SAME way. For now, I think I’ve resigned myself to a wacked out diet, making nearly ALL food for us at home….(we just eliminated wheat and all gluten– in addition to dairy and soy– and it was SO depressing initially) and being on meds until he’s two at least. His sleeping is still pretty crazy, but the gluten removal has helped a lot. You are such an amazing trooper too for doing this diet all along. I KNOW how hard the MSPI diet is for bfing moms….

I’ve also had a lot of days where I’m just wondering why the heck we couldn’t have just been normal with food, or even a “normal” refluxer, like you said! When we’re around other kids and it seems every SINGLE thing they eat on a regular basis is not allowed on our diet. It drives me mad. Not to mention that I’ve only slept a seven hour stretch three times in the last year…Not trying to focus you in on us, but just to let you know that you’re not alone in thinking this AT ALL.

Just think, a lot of kids outgrow MSPI at 18 mos or 24 mos. It might be right around the corner for you. I really hope it gets better….

[Anonymous]

My first born had no reflux or digestive problems at all, but I KNOW that everytime I gave her milk (either from my breast milk or from formula) she developed a terrible stuffy nose that would last for weeks. It drove me mad, and no one believed me. I finally eliminated all dairy from my diet (I was pumping breast milk for her) and only supplemented with soy formula and her congestion cleared up. As she got older I’d try dairy from time to time. She could not handle it until she was well over a year old. I don’t remember exactly how old she was when she could finally tolerate dairy, but she finally could sometime around 13-16 months.

My doctor told me that some babie’s only allergic reaction to dairy is nasal congestion, so at least she believed me.

Hang in there…sounds like it’s been a long road for you…hopefully he’ll turn the corner soon.

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