Infantreflux.org | i need your advice!

This topic has 10 replies, 1 voice, and was last updated 17 years, 10 months ago by Anonymous.

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October 1, 2008 at 5:42 pm #57297

Anonymous
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okay so nothing has worked yet!
current symptoms: awake every hour at night (sometimes every 2) and in pain. spitting like crazy. no longer having daily bowel movements–the last one (this morning was a little mucousy, but not as bad as in the past–it is normal bf poop color)

medicine: we were on the prevacid solutabs for 18 days total the first 12 wereat 15mg/day, then 2 days at 22.5mg and 4 days at 30 mg. We went off the prevacid for 5 days while waiting for the capsules b/c finn was reacting to the solutabs with intestinal pain, grunting, etc. We have now been on the capsules at 30 mg/day for 8 days. I know that it could take 14 days to work, but do you think it would after being on it for 18 then off it for 5…?

And…we have seen no improvement! in addition..I have been on strict TED for 14 days–no change. I have been taking him to NAET sessions (Namburipad’s Allergy Elimination Technique) as well. That Dr. tested him and found him to be sensitive to gluten, dairy, & soy (among others). She will actually be clearing him for those sensitivities, but in the meantime I just decided to add back in foods that she said are not a problem for finn (quinoa, oats, millet, corn). So that’s where I am with the diet.

ugh. i am so frustrated and sleep deprived. I can’t stand to see my baby in so much pain (screaming, sobbing pain). i also hate giving him so much medicine if it’s not going to do anything to help. i can’t stand the medicine-y smell he has!

One good thing…the caracream (now buffer babies) just arrived! so at least we will be spared the torturous wait period twice a day.

what are your thoughts?

October 1, 2008 at 10:12 pm #57308

Anonymous
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WHOA nelly, Hold off on the Oats…and get a scope done…..I say this because if the marker showed a reaction to gluten then the issue could be Cealic’s Disease…..an EDG will show if this is true or not. They will take the 4 biopses and can jsut abou tell by how the esophagus looks.

I woudl ask them whether or not you should add in Wheat, oast prior to the EDG to see if youcan get it to pop positive for you. The thinking would be this….if you eleimate all of the gluten from your diet youcould get a false negative for Celiacs.

October 1, 2008 at 11:07 pm #57310

Anonymous
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What is an EDG? (some sort of endoscopy?) The allergy ‘test’ wasn’t a traditional western medicine test that showed ‘markers’ for gluten, etc. It was done with NAET…so that may make a difference. What is the allergy test called that shows markers for gluten, etc? Is that how you know if you should have an EDG? Thanks!

one more detail I forgot to add…he is also teething. he’s my first baby so I don’t know what to expect with teething– I know that most of you say that it makes reflux worse…

October 2, 2008 at 8:12 am #57313

Anonymous
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Just wanted to add my 2 cents about celiac, etc. My ped GI’s specialty is celiac disease. He does national lectures, etc. Anyway, our ped & ped GI are concerned about celiac w/ Evan… but ped GI said we can’t test until @ least 6mths old & even then it will not be that accurate… more accurate after 1-2yrs old. We even had an EDG (upper endoscopy) & colonoscopy so he had the chance to check for it if he thought it would be beneficial.

My thoughts are that there’s still something bothering Finn (obviously). If you say his diapers are normal color, consistency & smell then the other culprits are either reflux or meds.

I can usually tell the difference b/w reflux pain & tummy pain… can you tell if it’s either of those?

I’ll be honest: Prevacid in general (regardless of kind b/c we’ve used it all: capsules, solutabs, caracream) bothers Evan’s tummy. He was on it the past week. Although his reflux was completely under control while on it (b/c it flared up from vaccines) he was up every 1-2hrs from tummy issues. His diapers were normal (as of 2 days ago) but he was still squirmy & thrashing in crib. Anyway I stopped the Prevacid yesterday & last night he slept 7-12 & 12-4:30. I looked back @ my logs from the past & he did the same thing when we stopped the Prevacid back in July. Just a thought… the key though would be to make sure his esophogus is healed before stopping it to see… & continue an H2 blocker.

Okay, I’ll stop my rambling. I really didn’t want to believe that the Prevacid bothered him so much but it’s really the only common denominator.

Also, fwiw- oats are gluten.

October 2, 2008 at 11:25 am #57317

Anonymous
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thanks erin and jessica–the info. about the celiac is interesting and i’ll definitely bring it up to my dr.

we just had the worst night ever. I was basically up all night. dh slept in another room b/c he wasn’t feeling well. finn was up screaming in pain so much of the time. i can usually tell the diff. btw reflux and intestinal pain. it seemed like he was having both–stinky gas, straining and turning away from the breast, cringing,crying as he nursed. to top it all off, he’s also having teething pain.

maybe it is the prevacid….i do know thhat his esophagus isn’t healed yet..

erin congrats on the sleep! also–how do i get the home hemoccult tests?

October 2, 2008 at 12:49 pm #57320

Anonymous
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Colleen,

I’m so sorry you (& Finn) are having such a hard time… esp a rough night last night – it’s so hard.

Couple things… if he’s still having stinky gas then (imo) chances are the intolerance is still there & the culprit hasn’t been removed.

Below I’ve copy & pasted what I posted a while back re: hemoccult tests.

My dh is in medical supply sales so he just orders the hemoccults for us & we develop @ home. Both our ped & ped GI know we do this & support it. It’s super easy. The brand we use is the namebrand that most office’s use.

I did some searching & found a site that has the same brand we use (Hemoccult Sensa by Beckman Coulter) & you can buy them direct from them for around $82 for a pack of 100.

http://www.medexsupply.com/diagnostic-tests-blood-fecal-occult-tests-hemoccult-sensa-singles-x_pid-706.html

Hang in there & keep us updated

October 2, 2008 at 1:29 pm #57324

Anonymous
Inactive

one more thing…
the stinky gas didn’t go away throughout the past two weeks of TED. Could the intolerance be to something still in his system from before the diet after 14 days? or… is it more likely something he’s still getting?

October 2, 2008 at 1:35 pm #57325

Anonymous
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I would say it’s most definitely something he’s still getting.

In our experience (& I’m sure all babies are diff’t but I’ll share how it goes for us)…

The stinky gas is the 1st to go & the 1st to arrive (when trialing a new food).

The smell of the diapers (sweet smell vs. vinegar smell) is usually the 2nd to to & 2nd to arrive.

The last thing to go & arrive is the mucous.

Example: I eat an offending food on Monday morning. By Monday afternoon he has stink gas (& continues to for 2 more days). By Tuesday morning the stools are vinegar smelling but still ok consistency. By Tuesday afternoon it’s the triple whammy (stinky gas, vinegar smell stool & mucous diapers).

All that to say that I definitley would think that after 2wks the stinky gas should be resolved.

HTH

October 8, 2008 at 10:40 pm #57545

Anonymous
Inactive

wow Colleen – other than being on TED you are describing our exact same scenario…i just posted in the MED topics too. and since our boys are within 11 days apart we seem to be running a parallel course of getting better and worse. ben has also been a fussy breastfeeder again and was preferring pumped bottles…after all i am avoiding the Alimentum we have if i am working so hard to “cleanse” my own milk..

i am thinking constipation is REALLY bothering Ben. i am bothered by the fact that our Ped GI completely wrote off reading into the stinky gas and mucousy diapers. she asked me to be more SCIENTIFIC about my interpretation of Ben’s misery.

we too are up every hour or so. and really wonder about the prevacid…. and i SHOULD be doing TED but had good results after eliminating dairy, soy, wheat and citrus. i HOPE the caracream is on the way…i want to try the capsules but haven’t gone any time without any meds in a while. maybe i should try that…

i can say the teething (which we are also dealing with big time) disrupted my first ds’s sleep and he slept all night at 2 mos. by 5 mos. he was night waking b.c of the pain – but as we know there is other pain going on here that i read as intestinal – and since ben isn’t pooping regularly i am on the constipation idea.

AGH. what to do? i also need to pay better attention to the gluten/ wheat elimination. i was doign wheat more than gluten…

hope you – WE – get some sleep and good advice…i am pulling out my probiotics for him too as i have seen it suggested here that they seem to help. but GOSH – between some tylenol for teeth, the prevacid, and the Lactulose the ped gave us for the constipation – i feel like i am drugging the poor guy too much – esp. to have him still be in such pain.

i started this process in June or July thinking I would avoid the meds. boy was i wrong!!!

-kristin

October 9, 2008 at 12:33 am #57548

Anonymous
Inactive

kristen– i am so sorry that you are going through this as well… it sucks.
i know that you were resistant to the TED at first. but maybe it will save you time in the end? you could just try it for a couple of weeks at first. i didn’t see any improvement at that point, but now the mucous seems to be gone and finn is having bms more often (although still stinky gas). i stopped the strict TED this week and started adding in other stuff (non-scientifically, i might add! i was feeling weak..he had a green poo today and i have 4 suspects!)
does ben have hard stools? or does he just go a long time btw. bowel movements?
if you had some results with your no wheat/citrus, tomatoes,nuts…maybe try to expand it to gluten (and are you avoiding dairy/soy too?). i miss bread terribly but it’s actually not too bad.
have you confirmed that you are getting the caracream? that made everything so much easier for us. the solutabs were not good for finn.
I’m taking a probiotic and so is finn. I’m also taking enzymes and giving them to him a few feedings per day.
we’re aggressively doing NAET treatments…but that is a whole other story–let me know if you’re interested.
i remember that you said you’re from rhode island? I’m from there– but live in california now. i was back there last month–it would have been good to meet!
hang in there… i hope tonight brings us both more than 1 hour straight of sleep at a time….
ben is adorable!

October 9, 2008 at 11:32 pm #57574

Anonymous
Inactive

colleen

we live in bristol! definitely would be great to meet when you are next in RI.

tell me about green poop. is that an indicator of bad things? ben’s poop is typically loose, muscousy and stinks. sometimes the BF yellow seedy. i was writing the green off on eating spinach salads and maybe the probiotic he gets. I am taking a probiotic too. we’ll see about improvement.

the buffer babies kit came today (test kit) so i am anxious to try that out.

read my post in the medicine thread…i wrote more there. i would love to connect with you more…seems we have lots in common!

no sleep last night – and tonight couldn’t get ben’s prevacid solutab timed right for the first time – so he had none. see if that makes our misery worse or better.

considering TED – just wondering how eating apples and other squashes and good healthy foods (non acidic) can be bad!!! seems extreme – but probably will go that way soon. see what the “DR.” says tomorrow too..

thanks and happy sleep to you too! and i am interested in your NAET…

we need to talk!!!
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