Posted By Posting
Jul 22, 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.... :(
Sebastian's appointment with Dr. Wood - I love this man as much as I love Johnny Depp (and that's a lot).
Hi everyone! I just wanted to check in with you from Cloud Nine and give you an update on my little man. We saw Dr. Wood this morning, and honestly, I feel better than I have in 10 months. He is truly wonderful and if any of you need an allergist and can swing a trip out here to Baltimore , IT IS WORTH IT. AND YOU KNOW HOW I FEEL ABOUT HOPKINS IN GENERAL! (And if you don't, please refer to my signature photo and caption).

The appointment started off on a good note - we weren't ignored and kept waiting for HOURS like we have been for every single Hopkins GI appointment we have had. One of the fellows actually walked us back to an exam room and stayed with us for 45 minutes, getting a complete history for both Sebastian and his parents. Then she left and said she was going to discuss it with the doc and that he would be right in. Well,I have heard that before and waited two hours. But not this time! Dr. Wood was in our room within 10 minutes. Here is what he had to say.

He said that Sebastian is an "exceptional young man with a extremely complicated set of allergies." He said Sebastian (based on history) has a combo of IgE allergies (show up on test), non-IgE-mediated allergies (don't show up on test), and oral allergy problems (he reacts to fruits grown on plants whose pollen he is allergic to...hence the banana atrocity). He said that the diagnosis of Celiacs Disease is "completely irrational" and that Sebastian has about a 1 in 1,000 chance of having it. When I told him our stupid GI told me to cancel our appointment with him, he said, "That is ludicrous. That doesn't make a bit of sense to me."

He then told me that the GI's report from when we went to the ER a few weeks back SAID THAT THEY HAD CONCLUDED THAT SEBASTIAN HAD THE FLU. THE FLU?????????????????????????????????????????????????????????????? Does that explain why he is fine 24/7 except for when he vomits a full bottle in the middle of the night? Moron. Thanks for the proof that you absolutely did not take me or my child's health seriously.

He wants to keep Sebastian off of all foods but Neocate until at least October to allow his little body to heal. He then wants to go very slowly with introducing foods, starting with fruits and veggies and avoiding grains (he reacts to all of them that we have tried anyway).

He told us that he can't say 100 percent without testing, but he thinks it is ridiculous that anyone (meaning SEBASTIAN'S GI) to imply that Sebastian has various diseases when it is obvious that his problems are 90% food and 10% reflux (and he thinks that the reflux is induced by food).

He also said that he thinks Sebastian has been miserable since he was four days old because his body has been damaged since then! I TOLD YOU, STUPID GI! My theory was right! Poor little man just kept having problems on top of problems. He then said that Sebastian (this explains the low white blood cell count in his blood and the increased number of lymphocytes in his GI tract) is going to take longer than most kids/people to recover from colds, flus, etc because his immune system has been compromised by these food issues for so long.

He then told me that he sees a 12-year-old boy who could have been a carbon copy of Sebastian when he first started seeing him at age 10 months. That kid is now testing positive ONLY to treenuts and peanuts. NO OTHER ALLERGIES. He thinks with extra care, Sebastian can get here one day.

He then told me that Sebastian is very likely to react to pretty much anything in the environment and that I need to be prepared to, well, accept it. He said that I can't keep him in a complete allergen-free bubble, but I can keep him safe. Dr. Wood also said that he suspects that Sebastian's mysterious hives are very likely the result of airborne exposure to his allergens. For example, when my husband cooks (I do NOT cook, but my husband is awesome), the vapors and particles are released up and Sebastian can very easily breathe them in and react...or they can touch his skin and give him hives. OHHHHHH! That's where they have been coming from!

He told me I can't go through with my idea for a jell-o molded fire truck for Sebastian's first birthday because he thinks Bassy will react. He also nixed the edible flower layer cake idea (so Bassy could pull it apart and throw the pieces everywhere) because he will probably react to the pollen in the flowers. I am going with my last resort, which is to make Sebastian a giant birthday cake out of...legos!! (The huge kind).

What makes me even happier is he told me that since we are putting hardwoods down in our new house (we really are...we didn't hire anyone because we are poor...hence my MIA status), we don't need to find Louise a new home! He said that she is such a tiny part of a huge puzzle. Hooray! I explained that she would be very happy to hear that.
Dr. Wood explained that the rash on his neck and chin that everyone (including all docs) has told me is a drool rash is actually eczema. He also told me to stop using Johnson and Johnson's baby wash because that is what probably caused his eczema breakout the last few days. We had been using an Aveeno eczema oatmeal wash without a single issue, but I stopped using it because I worried the oats may have been contaminated with wheat. I guess this is what he means when he says Bassy will react to everything. Same thing has been happening with sunblock. And again when I let him play (supervised, of course) with a big bowl of popcorn.

I think the biggest relief for us was that someone finally explained his thoughts
Jul 22, 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.... :(
Wait...I wasn't done. Someone finally explained why he thinks Sebastian vomits. He said that with his allergies, he has a lot of congestion (check!) and that his post-nasal drip probably worsens a tnight (check). He thinks Bassy swallows it and then it irritates his stomach and eventually triggers his gag reflex. That makes so much sense since it is ALWAYS that first bottle after he has been asleep for hours!)

I guess with no food intros, I'll be resigned to middle-of-the-night feedings for some time...but that is Ok. I am just so relieved that my little man is healthy and that we finally got some answers! Hooray! GO SEE DR. WOOD.
Jul 22, 2008
baby quinn's mommy
Mom to a 3 year old baby girl with severe reflux: g-tube, nissen fundoplication. dx: RAD, failure to thrive, DGE, epilepsy, sleep apnea, paraesohphogeal hernia, high lactic acid there's more "unknown disease"... Hospitalized 12 times, PT graduate! ST graduate! OT graduate! Current Meds: singulair, zopeonex, pulmicort, reglan, Keppra, Trileptal, vitamin B6, Veramyst. Current weight: 34 lb. Current height: 39". g-tube dependent, oxygen 1-2LpM all day and night PIC: Ms. Quinn
Photobucket
OMG! i am in tears happy for you!!! Dr. Wood sounds like an AWESoME doctor!!! Stupid GI doctor! Thank you so much for updating us! I really don't have much to say except that I am incredibly happy for you!!!! -Sarah
Jul 22, 2008
sam'smom
EE?
I have not posted in a while, but have been following your story. What did Dr, Wood say regarding EE?
Jul 22, 2008
soik2000
Wow! What a great appointment. It makes all the difference when you you find the right dr. Sorry to hear about the birthday cake! This give me so much hope for nat. We see our allergist on the 30th. I know it's so hard not to give him food, I was so upset this weekend seeing my nate open his mouth for solid food and not being abe to give him any. I just missed a call from the dr to set up an appointment for our scope. I am so glad you finally have some answers and can now work with the situation to make sebastian happy and healthy.
Jul 22, 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!
Oh man, happy tears here for you! Yea! I am so, so glad you've found Dr. Wood! Oh, man...I wonder how much it would cost for us to fly there? Seriously, it sounds like he's going to get your little man all figured out, and at least have some answers for you that make sense. That's the first logical thing I've heard in a long time! Hooray! *~*~happy dance*~*~
Jul 22, 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.... :(
Hi...he said EE is not a concern at this point...!!!
Jul 22, 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.
I am so happy for you guys!
Jul 22, 2008
lauren'smom
Jennifer - 1st time mom. Lauren (6/1/07) diagnosed 9/07 with GER at 3 1/2 months. Prevacid 7.5 mg in the am. Currently drinking whole milk and eating great!!
No longer aspirating! Yippee!
Picture: Why would Lauren play with the hundreds of dollars worth of toys scattered in my living room?!?! When she could play in a box! Estimated move date: Oct. 3rd!
wow! Wow! WOW!!! What an awesome appointment!!! I love that you got so much information and great news! I am happy that you're happy!
Jul 22, 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
AWESOME NEWS!!!!! I am absolutely thrilled for Sebastian!! (Just a little side note - the friend I was telling you about says that a number of her patients have had trouble with Hopkins. She sends them up to Sinai in Baltimore for O&P stuff. She, herself, goes out to Anne Arundel Medical Center. She is still asking around about the GI stuff)
Jul 22, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
YAY!!!! I am so glad the apt went well!!! We have the eczema/food allergy issue too. Wish your allergist was closer. LOL. FYI, We use the Cetaphil for bathing with eczema flares. :)
Jul 22, 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!
Wow, Wow, and Wow! Are you just a little excited? I know you have to be :)

Thank God y'all found somebody that knows their hiney from well you know.

I've never used the aveeno stuff bc it seems to have fragrance, but eucerin or aquaphor cream has always worked for Morgan's and Maggie's eczema.

Hope he gets over the flu soon, lol.

Jul 22, 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!
LOL, I didn't look at Lauren's mom's post before I posted, I swear.
Jul 22, 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
This is the best news I've had in WEEKS!!! I am so incredibly happy that someone FINALLY listened to you and gave you some reasonable answers! Stupid GI doctor.
Jul 22, 2008
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
*Dancing wildly with random backflips* I KNEW there had to be at least one other MD out there that still cared! I'm so happy you and your little guy FINALLY have someone in your corner to back you up. It makes me wonder why everyone SAYS that "mom knows best", but then won't listen when she speaks...
Jul 22, 2008
katiesmommy
Tracey, mom to Katie diagnosed with GERD at 3 week.
Great news!!!! So glad that he listened to you and actually had some answers beyond Celiacs!!! BTW: my parents were told to clear out the house of everything when I was little to help clear my allergies and they did the best they could (it was the 70's after all) and I got over a lot of my allergies so there IS HOPE FOR SEBASTIAN!!!!!!!!!!!!!!!! Yea new doctor!! No Louise piles for Dr. Wood! :)
Jul 22, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
I am so glad you finally are getting some answers. I hope that yall can get everything worked out. The dr sounds wonderful. So glad to hear he doesn't think it is celiacs! This is all just great news and we are so happy for you. Yeah. Oh, and I was going to say you might try "California Baby" products. They are super pure. You can get it at Target and whole foods. It is good stuff. My niece react to everything they tried, and finally this worked and her eczema improved.
Jul 22, 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.
OMG. I'm so happy you found this doctor. i'm so jealous and i'm thinking about asking my rich jewish grandmother to send me money so i can drive there and pay for an appointment. SERIOUSLY!

I'm glad he said that celiac's is completely irriational. it sounded fishy, ya know. what an idiot. did dr. wood give you another GI to see, by chance?

in regard to the flu. WHAT IS WITH THESE STUPID DOCTORS!! our peditrician-whom is very nice and good with the baby-also told me that the vomiting was probably caused by a 24 hour 'stomach bug' all RETARDS should know that actually 'stomach bugs' dont exist, really, and taht 95% of the time people get tummy problems from eating tainted foods or something that they are intolerant to. so, i feel you on that one girl.

i would say that his conclusion that the reflux is caused by food is a good one since his tests have not shown any 'structural' abnormalities, corret? I wonder how his body got so damaged at that young of an age. Did he have to take antibiotics. my theory has always been that coyle's gut got all messed up because of the sepsis (caused by the hospital) and the stringent antibiotics (vancomyocin, etc. etc.) that he was on for 10 days... .

anyways, it is interesting what he said about recovery time. something to chew on. my neighbor, whom is nice but kinda makes me mad, brings her baby 6 wks younger than coy over here even when he has a fever. you know, when kids are CONTAGIOUS. anyway, her kid gets over colds in like 4 days (like i do). coyle gets sick for over 2 WEEKS! and, it soo makes his reflux worse! i'd have to agree with Dr. Wood on that one too!

i'm glad that i thinks that sebastian can outgrow all of his allergies. what wonderful news! hope he can be fine with nuts too!! so what are you gonna do about the cooking? are you gonna go allergen free? good news about louise... she needs to make more poop for all of us! as far as the cake, i think coyle will have one made of leggo's as well ...

middle of the night feedings.. do you wake him or does he wake on his own. coyle rarely wakes @ night on his own but when he does i always feed him (of course) even tho the textbooks frown on that. should i be waking him you think?

lastly, i too have been wondering why coyle occasionally has horrible reflux after taking a nap {this happens if he gets his bottle too close to nap time and he's having cold issues/allergy issues)...must have something to do with congestion as well and slower digestion time.
Jul 22, 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.
oh yeah, and you must really love the guy cause even after all these years i still love J.D. too!
Jul 23, 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!
I just wanted to come back and say again how happy I am that you've got such a great doctor! I learned so much just from reading your post...I actually am thinking about what he said and about Isaiah's problem with low white cells and thinking...hey, that makes sense! Dang, I've got to get back on track with finding a good doctor here. What a difference! Hey, I think Louise should work overtime making some little gifts for that ER doc and your former GI bonehead. The FLU?!? Tell them in that case, my kid has had the flu for about 10 years straight! Sheesh!
Jul 23, 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
awesome, AWESOME news! so glad to hear that he will likely get over his allergies! Lego cake, now that's creative!
Jul 23, 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.
Wonderful! I'm so glad that you finally found somebody almost as smart as you! Your instincts are right. It looks like you can rest assured until October! I'm glad that you have found the care that Sebastian deserves.
Jul 23, 2008
nanibear
Does this ever go away?
hello
I am glad that it wasn't nearly as bad as the doctor made it out to be. I think some doctors like to scare people. I am happy that you got all yourr questions answered. Now, your little one should feel better!
Jul 23, 2008
masonsmommy
Jodi, first time mom to baby Mason born at 28 weeks 12-10-07. He has GERD, DGE, MSPI, ?food allergies, and hypotonia (starts PT end of July). On Neocate (thickened with Simply Thick) and on prevacid and EES. Home apnea/bradycardia monitor d/c'd finally at 7 months!
Yeah!! It is SO GREAT that you found someone who seems to really want to help you guys not get you in and out (with lame explanations like the FLU!) The right healthcare provider is invaluable. Wish we could see him too. I know several people have mentioned eczema products so I thought I'd throw in my two cents, Aquaphor makes a bath wash that I get at Babies R Us and then I use the Aquaphor ointment too. It really seems to help his eczema (which he didn't have until SOLIDS-argh!).
Jul 23, 2008
amber f
I am so happy for you!!!! Is doc Wood going to have a chat with the GI. I think you should throw this in their face. At least I would feel that way. Well Just have Louise keep on making those packages:)
Jul 23, 2008
nicholas'smom
congrats!!
Congrats on the good GI visit. that doc sounds wonderful. Happy for U
Jul 23, 2008
mommyto2
BRANDON-Zantac and Bethanacol; Neocate formula, 2 sets of ear tubes, Adnoids removed, Vasomotor Rhinits, Asthma. Currently on: Xyzal, Omnaris, Flovent and Xopenex,
AUBREY-Zegerid 2x a day, Soy Milk, Tubes put in and adnoids removed (11-7), Hypotonia, ECI therapy for low muscle tone throughout trunk and hips, oral motor issues and sensory integration issues, delayed speech, Teething, probiotics
PICTURE: Aubrey in her cute cat outfit. If you look you can see how her right foot turns in. She walks that way as well. It is not as exaggerated in the morning's but gets worse in the evenings. This was after her nap.
Photobucket
Sorry I am late getting to this... I could not read this fast enough-I am so excited with you!!!! I am so glad you found such an awesome doc!!!!
Check with your
doctor first!