I am crazy and so are all of you

[Anonymous]

When I discuss my ds symptoms with the Pedi GI NP we see, that is the message I get. She is very nice and will to try but I don’t think she gets it. My primary pedi even said the same. No the GI doesn’t say it, but she doesn’t say much else. So I finally just asked–“So I am crazy, does no one else complain of this”. Well, it is rare. Rare, kind of like the subglottic hemangioma my ds has in his airway!! But that is another story. She needs to read this board more b/c I thought I saw many Moms posting about babies like mine who don’t sleep-wakes every 30-45 minutes; when you hold them to comfort them at night they twist, turn, wiggle, throw their head back and stiffen their legs,pass gas, burp, gulp—and that is all while I am holding him rocking, pat him, bounce (very small movements). I try laying in his bed, holding him while I sit up in bed, laying him beside me in bed like when he use to breastfeed–NOTHING HELPS. Finally he might sleep a couple of hours in a row between 4am-6am without needing me to help him settle.

But the thing she really seems to think I must be off my rocker about is when I tell her he gets worse every time I try to give him solid food. Weather it is rice (really bad-no more of that), peaches, sweet potatoes, whatever. So maybe it is not a food intolerance, maybe it’s a processing problem Just a thought. He does well for about 3 days then game on. He really does suffer at night.

I do see some signs he is uncomfortable in the day–I can hear him gulping some especially lately. I think it is like when an adult has a bad ear ache, you can distract yourself at work but not when you try to go to sleep at night. I have seen improvement (I use that word gently) since the meds and Elecare formula, but with all this I JUST WANT HIM TO FEEL BETTER–IS THAT TOO MUCH TO ASK!!!

So what is your child’s symptoms? Are you “crazy” like me Love to hear I am not alone.

Thanks for listening
Blessedmom07

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[hellbennt]

hugs mama! you’re not crazy!

has he had an endoscopy so they can SEE what’s going on in there and take biopsies, etc?

how old is he now & still like this?? (a year, right?)

(the extra ‘excitement’ is not directed at YOU, but at your doctors, lol)

have you TOLD them he needs carafate? this is a short-term solution…

have you tried mylanta when he’s all unsettled at night?

there could be a hiatal hernia (I don’t know about this, but there have been two mamas, maybe more, that it turns out that baby has this and they discovered it only bcse baby was getting older and not much improvement…)

hang in there!

[Anonymous]

Thanks for the hugs

No he has not had a scope/biopsies. She didn’t do a scope with my daughter until she was 3 years old and that was only after I said I want a scope.

Yes ds is 12 months now and he is still like this!! I think you are right that I need to TELL them he needs so carafate to see if it will help. I have used some mylanta, however I only can use it at night between 1am and 3am/4am b/c of the other medicine he takes (propranolol for his hemangioma–told not to give the mylanta 2-3 hours either side of his dose which is 10pm). Mylanta helps for about 10 minutes, long enough that sometimes I can actually lay him down for a few minutes.

Would a hiatal hernia show up on an upper GI? He had that several months ago–that was a nightmare. First time radiologist said ds had malrotation so repeated b/c pedi surgeon said he didn’t think so and films where “shakey”, so repeated and everything was good except for his reflux.

He is on Elecare and since I started that his reflux seems MUCH worse, but lower gut seems better. Could switching to Neocate help? I tired him on Neocate when I switched him from breast to bottle and he would NOT take it at all. Might do better now that he is use to bottle, but we do the vanilla flavor so I don’t know. If Elecare and Neocate are about the same then I don’t want to upset his tummy any more than it already is now.

[hellbennt]

they’re about the same…

try probiotics?

probiotics, brands used:

https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1

I think hiatal hernia can NOT show up on upper GI like reflux can NOt show up on upper GI (good question though!) don’t quote me on this, lol.

I think at this point I would TELL dr to rx carafate (you’ll need to see how to space it due to other medications)

and I think I might consider endoscopy? did it help your dd? was it traumatic or ok? If it was fine, then I’d say to go for it so you don’t wait until he’s THREE.

there’s a mom on here whose baby had a hiatal hernia- not sure how they found it? anyway she had success giving aloe vera juice…

ps: did a quick search- you can read/find more- search for 6 months & OLDER and use her name Anne as user name

hugs!!!

https://www.infantreflux.org/forum/forum_posts.asp?TID=13952&KW=hiatal+hernia

hellbennt2011-08-12 10:33:43

[Anonymous]

my daughter had a hiatal hernia and it did not show up until they went in to do her funoplication. she had had two upper GIs and an endoscopy and it wasn’t pushing through during any of the tests—so they couldn’t see it. the surgeon told me it was pretty good sized, too. if there is still a link to the pictures somewhere—(laura?) i posted a picture of her surgery that shows her hiatal hernia and what the fundo looks like on the inside.

your baby should not be this uncomfortable at 12 months old. how is his growth?

sylvia was failure to thrive and we finally did a scope and a ph probe when she was 8 months old. she was refluxing almost 25% of the time and her esophagus was getting ulcerated. she had her fundo just before she turned 10 months old. she continued to e failure to thrive and then eventually she started to refuse to eat. she would chew her food and spit it out or refuse to take food from a spoon. the only thing she would do was nurse. i suspected esophageal thrush–but my family doc said it couldn’t be—my ped GI said it could be, so he went ahead and treated her (he was 3 hours away). she started eating , sleeping and gaining weight—until she got sick. she ended up getting obstructive sleep apnea, which kept her failure to thrive—-she had her tonsils and adenoids removed just after she turned two. she has done really well since then—although she has twice recently made us a little nervous and has been tested for celiac disease and two weeks ago they tested her for juvenile rheumatoid arthritis—fortunately both were negative.

it sounds like maybe you need to see a new ped gi if possible. if not, i’d be for insisting on having a scope and a ph probe done.

i remember when i first joined this board i didn’t think that sylvia was nearly as bad as the rest of the babies on here—but she was my 9th child and i had had several fussy babies—so at first we just figured she was just another fussy baby—but having to hold a baby 24 hours a day for 2 months isn’t normal.

we were told sylvia didn’t have a hiatal hernia—but she did.

most babies with reflux do better when sitting upright–but sylvia refluxed more when she was upright than when she was lying down.

most babies with reflux don’t need a fundo–but sylvia did.

most doctors will tell you that esophageal thrush is rare–but it is not—two of my kids have had it and i am pretty sure i had it when i was on some really nasty antibiotics for MRSA–my chest really hurt.

i really would like to have a fundo myself–i have a hiatal hernia, but it looks like i might have eosinophilic esophagitis which might keep me from being able to have one–but i only developed the EE this last year. i have had to have 3 scopes done in the last 4 years to have my esophagus dilated because i have really bad reflux.

i hate it when doctors don’t want to consider something because they think it is “rare”—we’ve had too many “rare” things happen in our family for me to be put off by that.

[Anonymous]

Hi there and big hugs to you!! My son also has a hiatal hernia diagnosed at 11 months when he had an endoscopy.

i would also push to have the endoscopy done as for your child’s age this is definitely not normal. We also had the “rare” conversations….it was literally the exact word our pedi used. “Well, it could be that, but that would be extremely rare…” and after having that happen three or more times, I just realized that our reality is different.

We use zegerid, which is a ppi drug like prevacid but can be taken anytime and is a powder mixed with water, so I give it via syringe.

We used mylanta in the night and we have also used aloe vera juice– quite successfully when things were really bad.

We also have used probiotics on and off for years. My son also could never settle. Once his sleep began to get better I realized that he had never moved in his sleep and stayed alseep, he woke on average every 45 minutes for months and by 17 months of age had only slept a 4 hour stretch two times.

It took an incredible toll on me and at 17 months of age I took out all gluten from our diets, we were already soy, beef and dairy free. Taking out the gluten was the final thing we needed. Having the meds correct was helpful, having other things out of his diet was helpful, but with something still bothering him we couldnt’ move forward. Everything improved from there.

I can totally relate to your description of your child’s sleep. It was exactly like that for us. My son slept on top of me or propped up on me until he was nearly 2…. and I also nursed which seemed to be the only thing that could help him. He was 50% for weight so the first ped gi we saw didn’t take me seriously and told me I needed to get used to not sleeping nad lots of crying….needless to say we didn’t go back to her again.

My son has tested negative for celiac 2 times, yet still has a really hard time wtih gluten. He’s still very dairy sensitive but grew out of the other food sensitivities. My daughter was born 4 years later and had many of hte same issues. Her endoscopy, done at 17 months old showed an “extremely loose” esophageal opening, not necessarily a hiatal hernia in the gi’s opinion, but unusually loose.

So….sometimes they don’t find things in the endocsopies and sometimes they find useful things, you just don’t know until you have it done. In my son’s case, they did the ph probe and found he was refluxing over 200 times in 24 hours and this type of information was so helpful…it didn’t necessarily change our course of meds and such, but I KNEW and could tell ANYONE how I was NOT crazy.

I seriously thought I was losing it and even my husband questioned me because my son was our first so essentially everyone else could get their babies to sleep and feed them, etc. etc but we couldn’t. These tests helped my sanity a lot. They also gave us long term answers for looking at reducing meds and such. I hope you get some things moving soon and I hope your little one is feeling better! dosing of the right meds is also so important, so hopefully you can read about that here as well. Hang in there! Get as much help from family and friends as you can.

[Anonymous]

Well, a lot has happened since my first post. We have had an endoscopy (all normal), 3 ER visites and admitted to the hospital after a round of household GI bug (we were all vomiting). Now more medicine since ds couldn’t get over his vomiting. Endoscopy was normal while on medicines and no dairy/soy/eggs/nuts-boy that’s a surprise. But ds has gotten better after increasing his Bethanechol to almost double (now 2.5ml–he is 18 pounds) and adding erythromycin 0.25 during the admission. Now I don’t hear gulping during the day and no sudden coughing at night when he sleeps. He even settles himself better–gets his pacifier on his own, repositions himself and sometimes goes back to sleep on his own after a brief cry. Guess that rules out behavior issues since now with this medicine change he is doing all this just fine.

But the thing that I still just can NOT get an answer to is why he wakes suddenly, screams and cries, stiffens, twist, turns etc (if I am holding him or not). This may last a few minutes until he passes gas (toots) or 30 minutes and then gas or maybe all night. Ok, maybe constipation—but wait. This week he had a stool that was clay like consistancy on Thursday and then Friday it was a LARGE amount of thinner oatmeal (maybe a little mucous) followed later that day by stool that just absorbed into the diaper and was flakey on top. Now if I had given him Miralax like they suggest would that help or make the watery stool worse. After he went through this cycle of stools then he is better again. He did the same thing about 5 days ago. Just before all this starts he is not as eager to have solid food. I am so glad he is able to sleep a few hours now.

Guess what they want to do now–a VIDEO SWALLOW STUDY! Ok, I am still crazy . I just said things on the upper end seem much better. I even said striaght out to the doctor I think his problem now is BELOW his stomach. That’s when he ordered a video swallow. I guess if things are not going in well maybe it causes the problem way down below. Do we really need this? At least we have met the deductable–but it is still lots of $$$. I will pay whatever, give an organ, or whatever it takes to make ds better. But don’t waste my time and $$ for something that is not going to help. Or at least help me understand HOW it will help.

Thanks for listening. Hope this helps someone else someday.

BlessedMom

blessedmom072011-09-25 11:02:30

[hellbennt]

glad to read things are improving!

are you also giving probiotics? this might help w/ the gas/stool ‘cycling?’

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