Posted By Posting
Jul 17, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
The GI says this confirms Celiacs, but my heart, head, and gut tell me no. This is very long - I am sorry - but I just don't know what to think anymore.
Hi everyone. I am feeling pretty low and confused right now. You have probably read that we are trying to get to the bottom of Sebastian's tummy issues, and it has basically been like searching for a needle in a haystack (too tired to care about cliches). We had a scope and flex sig at the end of June, and we were told that Sebastian has severe reflux (I don't think it is SEVERE, though. I just think he has reflux that we can't get under control! These doctors confuse me.) and that his stomach and intestines are inflamed. We were also told he has four eosinophils in his esophagus and that he has an elevated number of lymphocytes throughout his digestive tract. There was mention of mucus in his duodenum (??). After these results, Sebastian's always-in-hiding GI ordered blood tests for Celiacs disease. The first two came back negative, and today the GI called me (I know! I was shocked, too!) and said that the third test, this serum test, came back with a very low number of cells they were looking for. Normal should have been 19 and above; Sebastian had 12. I really don't know what this means, but the doctor said this means Celiacs. She went as far as to say that I should cancer our allergist appt with Dr. Wood on Tuesday! She said we don't need it now that we have a diagnosis. WHAT? Has she never once looked at his charts? Has she forgotten that my 9.5 month-old child (WHO TOOK FOUR STEP SIN A ROW ON HIS OWN TODAY!!!!) has MANY food allergies and that is off everything but Neocate while his body heals???

She set an appt for us with the Hopkins nutrition clinic for 8/1. She wants me to learn about a gluten-free diet for Bassy.I mean, the kid has an IgE allergy to both wheat and barley, so I wasn't planning on giving him gluten! (or anything, actually!!) The appointment is a good idea, thoug h- what annoys me is she shrugged off my concerns about allergies.

Here is where my confusion sets in.

I feel like our GI doctor is happy to have a diagnosis so she can be done with us. I have had a hard time getting her take us seriously the entire time she has "treated" (ha!) my son, namely because he is tall, round, and thriving. But the kid oviously has problems...he can't eat anything, and his meds are useless. I am not sure he HAS Celiacs. We have absolutely no family history of it, and he has never had gluten.

You know what I think ? I think he has had this inflammation since he was BORN. His food allergies are so severe, and basically, he has never had a break. He reacted to half of what I was eating when I nursed him (had no idea WHAt at the time, though). We put him on Similac...he was a wreck. By this point, his GI tract HAD to be inflamed or compromised. Then came Nutramigen....allergic to it...GI tract harmed again...same with Alimentum (this was significantly worse than Nutramigen). He finally got on Neocate at the very end of January, but almost immediately, he was put on Lactulose for his constipation from it...and he reacted BIG time...more harm to the GI tract. Then came pear and prune juice...same story...acidic or fibrous fruit sinking into sore tissue. Then cam esolids...which has been nothing but one huge nightmare. He had problems from Day 1 with squash....then oatmeal...then rice...then pears/blueberries (although solo pears were fine)...and the worst was bananas at the end of May (you might recall he started with hives, then had diarrhea and round-the-clock vomiting for over a week...then the cycle began again...body was compromised, and I kept tryign solids, half of which he was allergic to. Last week or so, I finally accepted that he was going to tolerate absolutely nothing. He's now on Neocate only and is actually showing improvement after only two days.

What do you ladies think? Do you think my theory could be right? Rissaroo, what do you think about the Celiacs diagnosis?

I remember being scared to post on this board because I didn't think my son was "sick enough" (in the famous words of our docs)...and look at us now. I just want an answer. I want my son to have ONE day where he isn't uncomfortable.

Thanks for reading...if you made it this far without me putting you to sleep!!
Jul 17, 2008
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
Have they given him any new meds at least since his GI tract is such a wreck? Poor guy has suffered enough I would hope they would at least give him something for pain......I feel your pain though momma! You just want something that works!!!!!! Ill be thinking of you guys!
Jul 17, 2008
kmom
Worry Wart mom to
27 mo. reformed "happy spitter"
34.8lbs , 37in tall(oct)
Diagnosed A/R at 6 wks
Zantac until 1yr then Prevacid
Med free since February 08
peanut & egg allergies...still
Zoo Boo Trick-or-Treating (pic).
I totally know what you mean about not have a sick enough kid. My son was really big for his age until about 6 months ago. AR never made him lose weight, etc. I would whinethat Korbin woke up 3 nights in a row, he throws up all the time, etc. Then Sarah would come on and post a "real" problem and I'd fell like a sh*t.
I am sure you have heard it and said it too: we are all here to support each other. Problems great or small (or just seem great) are welcome. Good news is welcome too, of course!

There is alot to be said about mommy intuition. Maybe you should get a second opinion about the Celiac's. I was sure that Korbin didn't need a scope and I freaked out about it for months. After putting them off for 6 months they said they wouldn't treat him further with out one. I felt I had no choice and let them do it and HE WAS FINE! Yeah, no EE no striations, no irrtation.

Look how many times Sarah had to push Quinn's doctors to listen. She knew there was something wrong many times and has been proven correct most of the time. Mommies know their kids better than any old doctor.

Also, doctors are people too. Perhaps your doc is just so relieved to finally "find" something that she is ready to grab at it. Maybe her objectivity has been pushed to the limits by the mystery that is Sebastian. This is another good reason to either get a second opinion or push for more testing.

Good luck and go with your gut! ~Ronya
Jul 17, 2008
amber f
I guess I wouldn't disregard the allergy part. I would still be very conserned about that. I would keep the allergist appt and discuss all of this with him. Then I would get a second opinion from a different GI. JMO but I don't think a second opinion would hurt anything. It could confirm the celiacs or not. Then you know you tried everything. I am so sorry the doctors are not helping you. They should be explainning this all to you.

BTW~ YAY ON SEBASTIAN WALKING!!!!!! WOW SO EARLY. THAT IS INCREDIBLE:)

Jul 17, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
(((GIGANTIC HUG))) What a crap day. Ok, here are my two cents...just like the others said...go with your gut. Keep the allergist appointment and then run, don't walk, to get a second opinion with another GI - someone who will really listen (and more than occasionally show up). I wonder if maybe the allergist will know someone he can refer you to - I hope he does. It would be so great if you could get an allergy-GI team that worked together to sort out Sebastian's issues. Hang in there, Melissa - you WILL find an answer.
Jul 17, 2008
elysabethsmom
Sharon, Mom to Elyse, 17 mos (15 mos adjusted-preemie). Zantac/Elecare. History of: Respiratory Distress Syndrome with ventilation/CPAP/cannula, tpn, n/g tube, PDA, jaundice, apnea, bradycardia/tachycardia, severe anemia, blood transfusion, reflux, Sandifer's Syndrome, intestinal malrotation, hemangiomas, MSPI, feeding issues. ICU inpatient 53 days! 2 surgeries, 2 UGIs, barium enema, pH probe, endoscopy. Developmentally on target now! PIC: Yobaby Beard
Photobucket
lol re: photo caption. Sorry life sucks right now! Has he ever tried carafate? It is supposed to coat the stomach and is given for things like ulcers. Elyse was on it for a little while when she started spitting up blood (although for her i did not see ANY difference in her eating, a lot of other mommies did). I know you are still going to see the allergist....after all, if the other dr thought it was important enough to move the appt up 5 months, he has to be pretty concerned! hope he gets help soon. get another GI (like you needed someone to tell you that). I would go to a whole other practice.....if there are other Gis in that same practice they may be biased, and may work under the same school of thought...
Jul 18, 2008
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
I agree with Ronya. Mother's intuition is not to be ignored or taken lightly around here! Most of the time when one of us has thought something was wrong, it was! And too many times we've had to beg, plead, and DEMAND that the drs listen to us. I say definitely keep the allergist appt(I know you never thought twice about it), then go from there. Maybe you will get all the answers you need and you can actually send that pic of Louise to the GI and tell him to check her sample.
Jul 18, 2008
soik2000
Hi Melissa, Our son's sound just the same. I know what you are going through, as in my last post my nate is a big boy. The nice thing is we have a wonderful doc. at phoenix children's hospital,(our appointment tomorrow) is there any chance of getting a second opinion? I am currently looking for a new ped because our regular doc got mad because I did not wait for a referral from her to see the gi doc. Last few visits she has kind of blown us off. My thought is if you don't like me caring about my kids health then I don't want you treating us. I am not going to be a push over, and I know you are not either. I have and advantage of living in a big city and having my choice of dr. I hope you do too. I have feeling we are heading in the same direction of celiac, just found out runs in our family. Only you know what if best for Sabastian, I know it feels like we don't especially when we lack sleep, (nate up every hour through the night) it's important to be able to trust in your dr and it sounds like you don't have the trust that you need. Keep me updated. Sounds like we have the same child.
Jul 18, 2008
rissaroo
Picture: This is what happens when you raise a kid on health food and they get ahold of a Coke! Bad mom, that soda is NOT on the reflux diet.
UPDATE: Isaiah is now 12 and off meds! He is doing great, eating again and hopefully will be catching up in the growing department. I am still in the "hoping it sticks" phase, but we're so happy that he's better!

First of all: (((((((hugs))))))) to you, I am so sorry that things are so hard! Second, a big congrats on your amazing little guy taking those first steps so early! Hey, the GI issues aren't slowing him down in *that* department anyway, so at least that's good! And third, I was LMAO about your photo. Some days are just like that!

On the Celiac's...well, I don't know. Since he is already allergic to wheat and barley, and I doubt you were planning on giving him rye any time soon (what kid eats *rye* anyway?) I don't think the dx of Celiac's means anything at this point. Sure, go see the specialist and get some ideas on food...because if they *do* have any good ones (in my experience they don't always really know that much about it) you can use them anyway. For sure, though...he's not been getting that much gluten in his diet with what he's been eating, unless (God forbid!) his formula or meds have it. Double check everything he comes in contact with...medication, vitamin supplements, shampoo, lotion, *everything*. Wash your hands if you've handled gluten before you touch him. I know it sounds over the top (and I doubt that it's contributing that much to his problems) but at least you'll feel confident that he's not getting any gluten. I honestly don't think that just gluten is the problem, since he's not getting much (oats do have *some*, if they're not specially grown and processed) ...I would for sure NOT cancel any appointments with the allergist and I would not write off the whole problem to just Celiac's. If it *is* just Celiac's, then Whoopie! Once all the gluten is out of his system, he should be fine. That *can* take weeks or even months if a lot of damage was done. Some people are so sensitive that a whole lot of damage can be done with just a tiny amount, which throws off digestion in all sorts of ways. I would think they'd have seen flattened villi in his biopsies if that were the case though? Dunno, sometimes the damage is patchy and they miss it in a biopsy. But I think considering everything else...and especially considering that the little guy has tested positive to a bunch of food allergies already...it's probably more than just that. I would continue with the allergist, continue trying to figure out what's causing him trouble besides gluten, and then re-do testing when he's a good deal older. If he tolerates wheat later on, you could trial it and then re-test when he's had enough of it in his system to really make a difference. Did they do gene testing? You might also ask for that, next time they're testing anyway. I don't know if I'm making any sense here, and obviously I'm not a doctor (LOL) but it sounds to me like your GI doctor maybe isn't listening as well as he should be about the allergies. Whether it's Celiac's or not, it just seems to me that it isn't JUST Celiac's, and it would be silly to just ignore the other allergies when you know that they are causing him problems. KWIM? ((((more hugs)))), I'm sorry that your dr. isn't more helpful! And yeah, I think once a GI tract is inflamed it is d*mn difficult to get it back to normal...especially if it never knew 'normal' before! Hopefully with a good rest and some time when things are easier on him he'll balance out, and he will grow out of it. Kids really do grow out of these things, and I bet it's not too long before it gets easier! Do you have my email addy? Drop me a line if you want or give me a call.
Jul 18, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
I'm so sorry that they don't know what is wrong with him today any more than they did weeks/months ago! I agree to get a second opinion since 1) you can't get the GI to call you back 2) because it sounds like they still don't know what is going on. I agree to follow your gut as you know him better than any dr. can! Hugs to you and here's to hoping he has more good days while you are only giving him Neocate!
Jul 18, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I am SO sorry this is all so confusing. If I were you, I would keep the allergist appt as well. The more you speak with medical professionals about Bassy the more understanding you will have of how to help him. The poor little guy, it sounds like you are both just having an awful time. If you don't feel 100% on board with the GI, I'd look for a second opinion. But I think the people at the nutrition clinic should be a big help, particularly if you discuss his reactions to other foods besides "gluten". I'm sending some huge hugs your way!!! Love the profile pic. ;)
Jul 18, 2008
ceramom
Sarah
mom to Mila 2-20-2007
and Robby 4-22-2004
Mila is on Peptamen JR 30 cal by NG tube. Open Heart Surgery 2/08/08. Captopril, Zantac, Losec, Lasix.
I'd keep the allergist appointment, and I'd start him on a very very strict gluten free diet - just in case. You never know. And I'd go to the nutrition clinic, cause irregardless of how well he is doing on *just neocate* now, he's almost 1 and neocate won't be sufficient for his needs forever. They may have some suggestions of what he could try that would work with ALL his allergies.

All I can say is that if YOU don't think this is it, keep pushing. Remember how Mila " just had reflux " and then she " was just a cry baby " and then HOLY CRAP she was in heart failure? Eleven and a half months later? All of a sudden, " now " she has reflux, DGE, food aversions, heart complications, an NG tube, and an upcoming surgery for a gtube.

Jul 18, 2008
jmom
Josh 12 yrs colic as a baby
Jenna 6 yrs dream baby
Jessica (6/11/07) Silent reflux dx at 3 weeks
Went off meds successfully at 3 mos
Went back on Prevacid 8 mg TID 1/3/08
Hi! I can't remember what hospital you are at but I would definately go to the appt the doctor said you don't need to go to. I mean why not? Also I would get a second opinion from a pedi GI preferrably at a Children's hospital and, if you are already at a children's hospital, I would get a second opinion from a pedi GI at another children's hospital. Don't discount that the doctor could be right. Gluten may have hidden in supposedly gluten free foods by exposure at the factory, especially grains. Congratulations on the walking!!! Hang in there! Cristy
Jul 18, 2008
maiam
maia m - GERD. Nissen Fundoplication w/hiatal hernia repair.
Mom to
Son (10) GERD(aspiration pneumonias, apnea, tracheomalacia), Food allergy, Asthma
Daughter (6) GERD, Heart Murmur, Food Allergy, Asthma, Mold allergy
I know you are a member at kids with food allergies, too - right? If I were you, I'd post there maybe in the Kids with Eos disorders area, and ask if they have recommendations for good GIs in your area (2cents). Sorry - we went through several peds, 3 allergists, 2 GIs before we found our current team for my kids.
Jul 18, 2008
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I am def. not bored; I'm following your situation closely. I hope you don't cancel your appt. with Dr. Wood, because I think in a case like this you need more than one or two opinions. I agree that his GI system was compromised for a long time. We (or our Dr. advised us) to do the same things: stay on Similac, switch to Nutramagen, go to Peptamen Jr. (duh - all of these things are milk based). I wonder how he would be today if someone with half a brain had switched him to Neocate by his second week of life. Anyway, I'm thinking of you & pray you get the correct diagnoses & help for your son. Ellen
Jul 18, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i have to write quick b/c A is waking up but i really sympathize with your confusion! i wanted to tell you that maybe you should seek a second opinion if you can for a GI, still go to the allergist and at least get a consultation. If his GI tract is as messed up as it sounds, he MAY not have allergies (life long/life threatening) but his GI system might be thrown in such havoc from all the stuff going on it really dosen't know how to protect itself and is saying it is allergic to everything b/c it's trying to figure out how to protect itself KWIM? If it were me i would see another GI first and keep him on neocate only for a couple months to see how everything heals then do another endo and flex to check it out, if it is no better then see what you can do from there. BUT i genuinely think that he needs time to heal. Emi did much better with foods after we gave her time to heal. (not saying hes the same as emi but just adding my experience) ALSO our GI and nutritionist told us to go gluten free as well and she is Negative for Celiacs.... ugh screaming baby! sorry i really wish i could be there for you more! *HUGS*
Jul 18, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
oh YAYAYAYAYAY!!! for walking baby!!!!!
Jul 18, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
I'm sorry to read this. I'm frustrated and confused for you as well. I'm with you. keep that appt. with Dr. Wood and I'm sure he knows a thing or two about Celiacs. The nutrtion clinic sounds like a good idea as well. besides, how relaible are those tests on babies who've hardly been exposed to gluten?
Jul 18, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
Thank you everyone for your responses here. I appreciate them! I am definitely keeping the appt Tuesday with Dr. Wood, and I am going to take Bassy to the nutritionist, too. I am looking into a new GI (our current is no. 2...back to the drawing board!). What sucks is that our nutritionist, allergist (well, one of them), and dermatologist are all at Hopkins....like our GI. I think there is a good Children's Hospital in Philly (I am midway between Baltimore and DC, so it's not far), so that might be next. Our allergist (the original one who I love) might have some GI suggestions for us, too. Thanks again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Jul 18, 2008
eswrede
Mathias Johann - 12/14/05 - GERD, Hypotonia, Sensory Processing Disorder, Dyspraxia; Stopped silently aspirating at 20 months :)
First partial seizure on 7/2; First Endoscopy on 7/16; results: bile reflux gastritis.
New Meds: Zegerid & Carafate
Allergic to dairy
First - congrats to Sebastian on walking! Like Sharon asked - has he tried carafate? Mathias was just put on it b/c he has erosions or whatever you want to call them all over his stomach. It is supposed to coat the stomach so that the lining actually has a chance to heal. I was glad to hear that you are still going to see the allergist. There really seems to be so many connections between allergies and the state of a gi system. I grew up outside Philly and always hear really positive stuff about CHOP. I hope you get some helpful info soon:) Libby
Jul 18, 2008
seamus' mama
Seamus was born 7/6/07, one month early with Silent Reflux. Zantac since 3 weeks old, currently taking herbs and probiotics.
mama knows best. Doctors can be so discouraging, particularly the specialists who work so hard to protect their reputations. Hopefully you will see what Dr Wood has to say..Your concerns about allergies are obviously valid..Can you see a different GI and get their opinion? I'm sorry things have been so annoying. I'm glad you are keeping a sense of humor through all of this. Has sleep improved?Good news about the steps! I think about your posse a lot. I haven't been on the forum as much as I wish to so I'm a little out of touch.I have been pretty swamped with house guests and teething/sleep deprivation. Please keep us informed! Smooch that handsome boy for me!
Jul 20, 2008
nanibear
Does this ever go away?
hang in there
I hope and pray that you child's condition will get better. I am sorry to hear about his tummy troubles. Have you done your research on what is Celiac disease. I am not a doctor, and cannot give medical advice, but it looks like perhaps it might be an autoimmune disease attacking his digestive system. I am not sure, but you have to do your own research so you know how to talk to your child's doctors. I do not like it either when the doctor shrugs off the legitimate concerns of the parent. The nurtionist will be able to address your son's allergies. Doctors sometimes do not do it, because they do not specialize in nurition. But you make sure you doctor has seen your child's medical chart, before she starts treating him. Sometimes at the my child's doctors appointment, the medical secretaries can't find my child's chart. Once when this happened she wanted to over vaccinate my child. I told her, my child had that vaccination last month and I will not allow you to vacinate especially when you are not sure about what you are doing because the chart is not in front of you. Do you own research, doctors don't spend enough time to make sure you understand them. Hugs........I hope you find way to make you child be well.
Check with your
doctor first!