Help needed from all the veteran mommies!

[Anonymous]

Hello All-

It has been quite sometime since I have last posted by lurk here frequently staying updated and adding some suggestions to my “mommy toolbox”. I am hoping that some of the veteran mom’s have some input.

My dd is 19 months, dx with reflux @3 weeks and tx w/zantac, prevacid, reglan, carafate, and erythmycin all on and off to about 10months. At 10 months she was placed on Neocate and tested + for allergies to milk, egg, soy, pork and oats. At neocate and a change of diet she was a DIFFERENT baby.

Now the toddlerhood. She is still on Neocate and had been on 50mg of zantac however she has had, night screaming, refusing meals, and just fussy at times. We chalked it all up to the “I am a toddler, hear me roar syndrome” however in the last 4 months she has had 5 ear infections and 2 bouts of pnemonia. The dr’s are now questioning if this is a result of uncontrolled reflux. I am at my wit ends. Part of me I think is in denial and don’t want to chase this reflux rat in circles again. It seems like we have LIVED at the ped’s office and when not there I am chasing her around the house with a medicine cup or a breating treatment. I am at a loss of where to go from here.

The GI suggested upping the Zantac to 25 mg 3xday, eryromycin 4x a day and see what happens in 8 weeks. The ped is not too thrilled with this idea for she thinks she is treating an underlying condition. She has had a Ph probe, scope and upper Gi but that was about 14 months ago, should we do it again? Should we address the ear infections w/an ENT? She we consult a pulmonogist? Should I wean her diet back to the bare minimum and see what happens?

I just don’t know. Hopefully someone has some good advice/suggestions. Thanks so much ahead of time for welcoming us back.

Christina & Kathryn (ds)

[Anonymous]

Oh Christina! How frustrating and disheartening that Kathryn is still going through this. My daughter is only 5 months old and was an aspirater. We had recurrant infections because it turned out she was aspirating from the reflux and from a swallow dysfunction. They did a barium swallow test just to see if the liquids were going down the right tube. She is seeing a pulmanary doc and an ent doc. I didn’t know how many babies those docs. really do see because of reflux. Alot of times there is something else that corrolates along with the reflux. So, I think that is a good idea to find a ped. ent and pulmonologist. Good luck to you both! Sarah

[Anonymous]

I really cannot give any advice to you b/c Isaac is only 7 months old right now so i am not a veteran yet!

I just wanted to say that i am sorry that Kathryn (and you) have gone through all of that! I hope that these things start to clear up soon and you will get some answers to help her out!

[Anonymous]

Hey Christina – I only have a sec but will return later too .. .Just wanted to tell you that after 12 months of NOT knowing about the multiple protein issues my daughter had on top of her reflux . . .and the wakefullness (8-12 Xs a night for a year) and irritability we suffered as a result makes me a good candidate to maybe offer some advice as we’ve finally made it to the other side at 23 months we are med free and on whole milk – yahoo.

I tend to agree with your Pedi – seems like you’ve tried all routes for the reflux and the most effect you’ve gotten from treatments was when you controlled the dietary side of things. Prior to introing more meds and changing up that side of things I would try the easy and most likely cause and cut back on her diet. After about a month of that you’ll be able to see more clearly if that more concervative route was worth taking and go from there. It was my dd’s 11 double ear infections and constant inability to sleep that finally drove me to start researching the dietary side of things and honestly it was the very thing that caused so much strife for us. . .even after we got it under “control” it still caused some eradict issues in behavior and sleeping when we would give her certain solids. I too was living at the pedi’s and the GI had her meds upped to the highest dose possible. .. in the end it was time and diet that solved most of her issues – she grew out of the reflux by 18 months thank God.

Like the Pedi GI, the ENT didn’t have much to offer on the side of dietary or sleeping concerns but it did rule out hearing issues or ear pain as a real cause of wakefullness and irritability. I say go to the and ENT specialist and find one that practices with a lot of kids so that atleast they have some good input on that side of things.. . control her diet more and if you have a good relationship with your pedi, trust what he/she has to say and work with them. The specialists only do what they specialize in while a good pedi should be tying in all the peices for you. As far as the illnesses and ear infections go – are you in a heavy teething stage too right now? Could be just bad timing and cold and flu season are making everything worse. I would assume that if it were solely reflux causign those issues that they would have started at a younger age and not begun when she should be in the growing out of it stage of things? Once my daughter got on a roll it seemed like endless illness and misery but dietary changes and the end of cold and flu season saved us. Hang in there – it does get better!

Good luck and I’ll check back to see how your doing .. .

~Liz

lovemysophia2006-2-1 9:54:34

[Anonymous]

I agree with the diet suggestion. Kaelyn’s reflux was totally under control with prevacid, but we were having trouble weaning her off prevacid. Now that we’ve discovered her allergies, the weaning is going much better. If the diet change doesn’t work, then I’d try prevacid. Good luck!

[Anonymous]

Thank you everyone for your replies the encouragement really helps. Today was a HARD day, just the reality that we are facing this again. Sometimes I wonder, why were we blessed with reflux? Enough of the pitty potty.

I for sure am going to cut back on her diet. I have an suspicion that soy might be the culprit. She doesn’t get anything in which soy is the primary ingredient however she is eating alot of things with soy flour, soy protein etc. THis might be a real simple answer to a LARGE problem.

We see the ped tomorrow and hope to get some more answers. She had an upper gi, however is a Barium swallow/swallow study different? Should I advocate for another ph probe/scope to see what is going on?

I’ll update eveyone after the visit in the am. Anymore suggestions would be great.

[Anonymous]

Hi Christina,

I don’t know if you remember me, but I live in Long Beach and contacted you several months ago about finding a ped gi in the area. I’m so sorry to hear that things have gotten so rough all over again. It turns out my little guy has MSPI and we’ve been dealing with multiple night wakings — well basically since he was born, but things were really severe after he was 6 mos old. We removed all dairy and soy from my diet and his (I’m still bfing) and it was a dramatic difference. He has also been under the torturing influences of teething lately, just having a very dramatic reaction to it. Anyways, this probably puts me in a place to give some advice. We’ve also had all the testing and were eventually sent to a surgeon, who turned us away saying although it was really bad, he didn’t think it was bad enough for surgery.

SO….I agree with Liz, try the diet first. I would even wait on the testing (if you find that it’s even possible to wait) to see what happens with dietary changes. Then if dietary changes bring no change, I would really suspect reflux and I would definitely look into using Zantac along with a ppi, or dumping the zantac and going onto a ppi. Lucas takes Zegerid and it’s been a lifesaver. Have you introduced any foods to her that are especially acidic, like does she have a lot of oranges, orange juice, tomatoes, etc.?

If you also get to an ENT just to make sure that things there are normal, (which really means you want to cross it off the list), I think that would be smart as well. As far as I know, the barium swallow is the same as the upper gi and I think all that really does is show physical abnormalities, which would have showed up in her first UGI I would think. The ph probe will give you extremely valuable info, but if things aren’t right from the diet, it would be so unnecessary to put her and you though that all over again. I know we did the ph probe at 10 mos of age and it was really tough. I can’t imagine iwth a much older toddler. Have you reintroduced any hidden versions of hte foods she’s tested allergic to? So many foods have bits and pieces of what you listed were her allergies, that’s something to consider as well.

I wish you well and hope things improve…

[Anonymous]

HI LIZ!!!!!!!

I hate to hijack this post….but I have to say hello to Liz. I haven’t seen you on the boards in forever…and now I’m reading spontaneous reflux recovery at 18 mos? That’s so fantastic. Just to update you, Lucas ended up being severely MSPI, we still can’t do any dairy or soy– and he reacts if I even have a small bit of dairy, (I’m still nursing him). The bad thing for us that makes night wakings so crazy is his hiatal hernia. Anyway, I just wanted to say hello and again thank you for all the advice you wrote last summer which really helped encourage me to investigate MSPI, learn about it, and do the elimination diet. I use and give out the DISA site all the time on these forums, too. It’s great. I’m SOOOO thrilled for you that Sophia is better. Unbelieveable. I just can’t imagine no reflux and whole milk!!!

Hugs to you both!

[Anonymous]

On the subject of Soy .. .

Soy was the brick on the head that made me finally say “I’m an idiot – this kid is definitely MSPI.” Another “veteran” mom here on the board (Becky) has been a great source of info & support for me and I’d been slowly following her lead, cutting out dairy – researching MSPI – thinking along the lines of protein intolerance. Anyway, Becky had mentioned that her daughter Hannah was terrible on soy. But as many of us moms do, I was second guessing my own intuition and thought – maybe my dd just has issues with certain proteins … I mean how could I have been through this whole nightmarish year and it was under my nose the whole time? Anywho .. we went to straight soy milk at a year on my pedis suggestion despite me knowing all about the MSPI and having researched it to the hilt. I was still bfing but had introed Carnation good start soy with comfort proteins and been doing well on it. I guess I was thinking by now she was growing out of whatever and it couldn’t hurt. WHAT A NIGHTMARE!!! That child of mine was like a possessed demon .. not sleeping, temper tantrums, extreme irritability, itchy nose, just plain freaking out. Even though we didn’t have any other typical signs – diarrhea, spitting up, mucousy stool, rashes, etc. This was enough of an experience for me to say enough is enough – no dairy no soy, no nothin! I went back to the formula and within two weeks she was a different child, sleeping – eating – BEHAVING. That was it for me, no more second guessing. My thinking was the hydrolized formula had broken down proteins and she could tolerate some soy by 13 months but not straight soy .. .apparently I was dead on. She was on a restricted diet and then formula until around 17 months and then we started over again with the dairy.

So – long story short. .. soy is evil. .. beware .

~Liz

[Anonymous]

Hi Karen . . .er I mean ANNE !!! I am so happy to hear that you followed

the MSPI route and it panned out. .. sometimes even when I am doleing

out that advice I think. . .it sounds like such an easy fix, maybe its more

than what I’m saying and I should keep my mouth shut . But I am ever

so happy that it unlocked some doors for you! It is amazing that

something so seemingly simple can much such a drastic change isn’t it? [/

P]

Whats going on with the hernia situation? Did you opt for surgery? Poor

little guy. . .and poor you – its so tough when your not getting day to day

sleep .. .is it still bad or just one to two times a night? Sad to say but

Sophia still gets up most weeks once or twice . . .night time fears, new

skills, teething. But thankfully its not high need getting up, just plain not

a great sleeper. But shes leaps and bounds above what we used to be. I

know you can relate as you were in the every hour club too . .the only

other person I ever saw that kept my schedule at night . Hope your not

doing that still .. .. so glad to “hear” from you!

~Liz

lovemysophia2006-2-4 9:1:52

[Anonymous]

Once again thanks so much for the feedback. Sorry ahead of time for the vent.

Today I am DEFEATED and OVERWHELMED. We went back to the ped for a 3rd time this week and the ped said she is worse today then she was on Tuesday. I just don’t understand. Today she was wheezing worse with crackiling (hence the pneumonia) and both ears are now infected with puss. Only the left on Tues. It just doesn’t make sense. She has now been givven 2 doses of Rocephen via IM injection and 3 days of Augmentin. Add have to mention the every 4 hrs of albuterol and 2x a day pumlicort. So in short, we go back tomorrow and if not better I am going to push for an admission. I just don’t know what else to do.

I spoke with the GI and she said for sure this is all suspicous of the reflux rat but feels that his hands are tied until she is over this pnemonia. She has had a horrible bout with prevacid but maybe we need to give another ppi a try. (Anne I am real curious to hear about lucus and the Zergrid. Glad to hear from you. did you finish school??) He seems to think that at this point food changes are not going to make a difference but I am really hoping that the removal of soy might help. Now do I take ALL soy out including soybean oil etc??

Well I am off to get a few hrs of rest before we are up for breathing tx and what not. I’ll update tomorrow.

[Anonymous]

Christina,

So sorry to hear things are getting worse! To answer your questions, yes I would remove all soy. They say that the soy oil, like soy lecithin, is alright that the problem is really soy protein. But initially I was paranoid so I took out all soy. I would definitely not have anything with soy unless it’s JUST soy lecithin (which you’ll find is in nearly EVERYthing) but you could try just going cold turkey as well and take it all out for a little bit. I’ve found lots of food at the local Wild Oats in Long Beach– they have great cookies, etc. and a pasta called Chreese that lucas really likes with no dairy and soy. It’s kinda a “Mac and cheese” for those who can’t have the real thing. But you are probably close to a Whole foods as well, and I think they have a lot of choices there for MSPI-ers as well.

If you are interested in going to the Wild Oats, it’s near the Marina in Long Beach. The address might say PCH, cause it’s in a little strip mall right off PCH and 2nd Street if you know where that is. I’ve also had luck at Trader Joe’s. If you want more ideas from those places email me (new email address): anne coy ner@ yahoo. com (without spaces).

Also, we have LOVED LOVED LOVED zegerid. Some moms say their kids don’t like the taste, but for us the whole experience has been woderful. You don’t have to worry about compounds going bad, etc. etc. and it has a mildly fruity taste. I mix it up once a day and give it to Lucas morning nad evening. It can be given regardless of food, whcih is a HUGE advantage, not to have to plan around food. You can literally give it right before or after food, or inbetween, doesn’t matter when. I have to admit, I ended up at the specialists office you recommended, and we saw Dr. Sela-Herman and when i asked to go on ZEgerid she refused and said that the other docs and her decided it was the same thing as prilosec– so I should just try prilosec. And I practically begged her to let us try it since the other meds weren’t working. Don’t know if they have broken the prilosec bonds yet and tried a patient on zegerid over there. We ended up switching docs, she was just horrible for us. Wasn’t the right fit. Anyways, once we got onto zegerid and I removed all dairy and soy things improved a LOT. Further info is that zegerid is really not the same as prilosec (she was WAY misinformed), if you want do a search on the meds forum on this board there is so much info on zegerid, also screen name RefluxSol can answer questions directly about Zegerid.

And yes, I finished school (I can’t believe you remembered that!), I don’t really know how looking back, but my thesis got finished, passed my committee and is now sitting on my shelf. I still don’t have a diploma, but I’m hoping it will arrive soon enough!

Hugs to you and email if you have any questions. I can give you my phone number over email if that’s easier for you with all that’s going on.

[Anonymous]

Well back to the Dr’s this morning and little better news. Kathryn’s O2 sats were back to 95 and she wasn’t wheezing as much. The ped suggested that we give her another IM injection of Rocphen verse an admission to the peds unit. I guess Rotovirus is going around and that is the last thing we need. We have an appt with the ENT but not until the end of Feb.

Keeping fingers crossed in the last day or so there hasn’t been a sign of reflux so maybe the increase in Zantac is working!! My loving mother actually flew into town this afternoon from the other side of the country and is wiling to stay until we need her!! This at least keeps me off the hook of calling into work and being scared of her catching another virus at school!! So we are hoping for a uneventful and restful weekend!!!

Anne-Thanks so much for the info on Zergrid, I actually am a little more interested about it. So is it a compund mixture that you make each day? It sounds too good to be true! Does insurance cover it? I really am going to press Steinmetz about it. I am sorry that you had a not so great experince with that medical grp. All in all we have had GREAT experince with Steinmetz. I think that there have been occasions where he has thought that our problems were tiny compared to what he sees each day (which I am sure is true) but all in all he has been good. B/c she looks so good it is at times very deceiving that she has all of these problems. Let’s exchange emails!!!

[Anonymous]

hey . ..just wanted to say I was thinking of you and hoping things are

better. So nice that your mom is helping out! Anne . .. that Hi Karen post

was for you. . .I must have been in la la land as I have NO clue why I

would write “Karen” . .. must have been thinking of my friend Karen at the

time .. . sorry for the confusion. When your sneaking at work I guess

your bound to mess up.

Hope Kathryns feeling better soon and that you get some rest with your

mom around. . ..

~Liz

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