Here we go again!

[Anonymous]

Apologies for the whining …but I REALLY CANNOT take it anymore! Every time Ian shows improvement, it gets worse again.

Ian slept through last night (only the second time in 3 weeks AND he’s always been a sleeper-even with croup). And was very playful and happy yesterday and this morning. He had a bit of a rash on his face, but we thought that was from dh’s stubble. He shaved this morning. Ian mid morning starts to get really fussy/crying/screaming and has another really mucousy diaper (he’s been off antibiotics for 3 days and now back on prevacid solutabs for 7 days). He’s still really congested but has added coughing and wretching. He had major reflux episodes today (very clear) but yet laughed during spit ups. Now, he’s bottle refusing at last feed(after a second mucousy-brown diaper) and crying because he’s hungry! PLEASE!! He just cried himself to sleep and most concerning was we noticed the rash has actually gotten angrier and really red. We’ve changed nothing in his diet-he’s still on just elecare (although we added a little simply thick during last feed yesterday hoping he’d sleep better-but he never had a reaction to it) and we did add in one dose of zantac in middle of day until the prevacid kicks back in (he was on it for 3 months-great-then prilosec after endoscopy showed damage-still confusing as he was so happy on it-then switched back after prilosec was a disaster).

Shouldn’t the prevacid have kicked in for him since he was on it? Isn’t 30 mg a day enough?? Everyone keeps saying that’s appropriate then why isn’t it working? What other ppi’s could we try? IS it unheard of that a child on elecare for months with no reaction all of a sudden is allergic? Is it something in my apt-cats, cleaners…I just can’t take it! He was great except for the not eating and now he’s miserable and is beginning to not eat again? I hear so many of you with success stories, but Ian has only had one good run on ppi where he both ate and was happy…WHY is it happening???

I’m so sorry-I’m just at my wits end. I thought 6 months would be alot better and it’s just worse. I don’t think it’s normal for a baby who never had problems with sleeping(even before ppi) to wake up every hour crying and I just don’t understand why we can’t fix him!

Thanks for listening. PH probe is tomorrow and I’m sure they’re going to see reflux-but is it the symptom of something else or is it the cause.

Tracy(Ian’s Mom 9-26-05) Elecare and Prevacid

[Anonymous]

Im sure this has already been mentioned, but could he be reacting to the solutabs? I know some babies have problems with the lactose or the aspartame.

We are having a bit of a rough time at the moment too. Tyler is not really interested in bottles or solid food. He has just had 3 teeth come through and another 2 on the way. I can only put the problems down to teething or a cold. Has Ian got any teeth coming?

Is there anything new in the house? Cleaning products, animals, laundry detergent, perfume or aftershave? Its a long shot, but you never know.

I hope the doctors can find some answers tommorow.

[Anonymous]

Thanks Amber.

No,nothing new in the house. I am aware of the solutabs but he never reacted to them before and as he was on them 3 months, wouldn’t that be unusal…? Maybe it’s possible? They definitely don’t seem like they’re working anymore. He’s most fussy after them -but immediate so seems kind of fast. He actually eats better on the zantac believe it or not.

He is teething-I see one tooth coming in and I’m positive that’s aggravating things but doesn’t explain mucous or rash…

This is crazy! I’m sorry to hear about Tyler but teething sounds most likely since that’s a lot of teeth! He’s a cutie btw!

Tracy

[Anonymous]

Tracy, MSPI is strange. Sometimes it takes a few months for the milk proteins to “build up” in their systems. Mucuosy stools, gas, tummy aches, rashes… all sounds like an intolerence issue. It even makes them reflux worse. Maybe you can call the doc and ask for the 15 mgs. capsules (even though we should be on more than that). We put a bit in applesauce, (put a finger in her mouth and scope the little bit in there- sometimes its a battle) then 30 mins later activated by giving him the bottle or a meal. m

Ohh, and it takes about 10 days for the intestines to heal from the colitis and expel all the milk proteins out. Congrats on the new tooth! Hope he passes it through soon!

[Anonymous]

You would be surprised at what illness can do to these guys. After an illness things that they previously tolerated can all of a sudden cause problems. Im not sure what other alternatives you have, could you try Zegerid?

Teething is making things bad around here, but I am hoping that it will pass soon. It can also mess up their BM’s so could maybe cause mucous. The only time Tyler’s BM’s dont have mucous is when he has alot of solid food.

I would give him a day or two and see if it passes, if not then I would be trying an alternative to the solutab. Poor Ian, I hope he feels better soon.

[Anonymous]

Oh Tracy – I’m so sorry you’re having new problems – I was so hoping to
hear that Ian was on the mend. I know Elecare has no milk proteins, but
yes – maybe it took a long time for the lactose/aspartame in the
Solutabs to build up? Or same thing with Simply Thick – could he be
reacting to something in that which has taken time to build up? I’m SO
glad you have the appointment with the allergist team this week – that
can only help.

Please let us know how the PH probe and diaper test go today. Hugs to you guys – we’ll be thinking of you.

[Anonymous]

Rash is worse today-a little scratchy. Is it possible it’s from drool and teething? If that were aggravating the reflux wouldn’t that in turn add to the congestion and coughing? So hard to tell with all the things it COULD be…He did sleep through for 2nd night last night and for that we’re grateful. Seems in good spirits this morning and ate 6 oz fine. Seems way too bizare that he could be come allergic to the solutabs or elecare (but I realize anything’s possible). I really hope allergy team on Tuesday can point us in the right direction.

Amber-Tyler always has mucous? What did your doctor say? We just started mucousy diapers when he was on antibiotics last week for ear infection-they caused diarrhea and we assumed that was the reason. But still it hasn’t gone away…

Thanks Karen and Sarah for support!

Tracy

[Anonymous]

I think rashes can be from drool and teething – where is it? Yes, if
teething is aggravating the reflux that could DEFINITELY add to
congestion and coughing. I’d glad he slept last night and hopefully
that helps him feel better today. I think the Ph probe today and
allergist meeting tomorrow will definitely help and give you a plan of
action!

[Anonymous]

Teething ruins the most controlled reflux in my opinion. Isaac has 8 teeth at 9 months old and is working on 2 molars right now . For some reason it always gives Isaac a rash on his face and sometimes a loose stool. We always have mucous too. My ped said that it is normal in a formula fed baby so that i wouldn’t worry too much about. We also always have bottle and food refusal with each new tooth. He acts like motrin and tylenol don’t take his pain away either so we are kind of at a loss of what to do.

We tried prevacid with not much success but when we moved to protonix he was happy and started eating again. It may just be a matter of waiting for the prevacid to get all in his system again. I hope the ph probe goes well today and you get some answers!

[Anonymous]

That’s an idea re other medication – Tracy. Have you looked into
Protonix at all? Or Nexium? Maybe Ian needs something other than one of
the more traditional PPIs?

[Anonymous]

Tracy – glad you are seeing the allergy team, we are still on the waiting list (6 month wait). Hope Ian is feeling better. Tyler always has mucous in his BM’s although not like he used to on dairy. Initially the ped GI said it was intestinal irritation but I think that it might just be either a side effect of the Elecare or it is a side effect of food reactions. Tyler has a rash at the moment too, it could be from food or maybe all the drool he had down the front of himself yesterday- who knows? teething is the worst.

[Anonymous]

6 month wait-I’m sorry to hear that! And I was complaining about 3. We were fortunate to get an opening tomorrow, I really hope it will help although I suspect they’ll say at 6 months old that they can’t tell much. Maybe mucous is a side effect of Elecare? Although-finally today the diarrhea has stopped-actually no stool at all so we’ll have to see tomorrow if more mucus. Odd thing is, Ian never has mucous in his stool-only once prior when we tried Alimentum 1 month ago and he also had blood and now on the antibiotics. GI said today diaper came back negative for everything so again, who knows right? Rash had kind of miraculously disappeared late this morning and hasnt come back. Kind of makes me think it was teething as for the last two days when I touched his gums, he cried. Today he’s back to just biting down on my finger and smiling. Intestinal irritation? Wouldn’t that be a side effect anyways? Or is your doctor suggestion something else? Curious. How many foods is Tyler up to now? Kind of looking forward to trialing and not at the same time.

As for Ph probe-we have it taken out tomorrow am right before allergist visit. He was not happy when they placed it but he cried the minute he saw the nurse-is it possible he’s having flashbacks from the endoscopy and trying to find vein fiasco-it was the same nurse?? Interesting if that’s so…Once it was in, everything was fine. He was actually pretty good today – which ironically will probably screw up the probe. I betcha anything once they take that tube out-he’ll start refluxing again. Fussy period during middle of day but I think I’m seeing a correlation between sitting/exersaucer and reflux…would also make sense. Also, nap was a lot of crying out and going back to sleep again-we’ll see if probe picks up on that or if it’s something other then reflux. Here’s hoping we get sleep tonight!! Glad we’re doing this and I’m really hoping for some answers.

Thanks again everyone and apologies for melt down yesterday. Was one of those moments.

Tracy

[Anonymous]

Good luck with your visit today! The 6 month wait is okay for us because there is more testing that they can do at 12 months. I dont think there is much testing that is reliable at 6 months, but I think it would be good to have experts to ask questions to when you are trying new foods. GI docs deal with allergies but it is not really their specialty. We are lucky that the allergist that we are seeing is also a GI doc, he has been trained in both so hopefully should be an expert in gut reactions rather than the normal excema and asthma type reactions to foods.

Tyler can tolerate potato, pumpkin, chicken, amaranth, and we are on day 5 of beef. He doesnt tolerate them 100%, he is still much happier when he is on Elecare only. I am hoping that he will get better as he gets older.

Hope the probe can give you some answers. I think babies do remember bad experiences. Tyler always cries now when he is put on a bed in the doctors surgery.

Please dont apologise for having a meltdown, thats what we are here for! I know how frustrating it can be.

[Anonymous]

Glad the diaper test came back negative – good luck with the allergist
appointment today – let us know how that goes and what the results of
the PH probe are. Definitely sounds like he remembered the nurse and
what happened last time – poor little guy.

Have to call Dr. M today to make an appointment for our continuing
constipation issues – Marisa was up screaming from 4:30-5:30 and pooped
out tiny pebbles and then slept another 45 minutes. We’re all tired
here today…

[Anonymous]

Oh Karen-I feel for you guys! Dr. M really is good – just a little sensitive I think. She keeps apologizing for making Ian feel worse and I’m like-Are you kidding? At least your trying to help. We didn’t get any sleep either-Ian up since 3 -really uncomfortable, flopping around, and whining/crying in bed. If probe doesn’t pick that up as reflux-we have to wonder-WHAT is it then that’s causing him so much discomfort for 3 weeks! Oh well-positive side is that at least he did it on the probe right? I’ll cross my fingers for Marisa today and hope she has a great big soft poo.

Amber-yes, I totally agree about 1 year. I think it’ll be much more definitive then. When you say Tyler still cant tolerate 100%-do you mean by his mucous or by just general fussiness..Did your dr. say that’s pretty normal? The reason I ask is because as I’m about to begin solids, I’m so hyper aware and don’t want to be paranoid and take him off something if it’s ok for him to be on it (even if there is some tiny tolerating problems). I always have this theory that being on Elecare/Neocate sometimes makes there stomachs so sensitive to anything with substance to it. I mean, our parents had children with colic right and most outgrew it by 6-9 months on regular formula. We know now that it was probably mspi or reflux but they just didn’t know back then. I always say this but again just a theory (or wishful thinking).

Tracy

[Author]

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