Posted By Posting
Sep 30, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
little vent & update on Adriane
let me start at the beginning. Last week she was pooping whole green beans. The babysitter actually had to pull some out. (I know, TMI) So, we stopped all food again. We are back to formula only. Friday was when the allergist was wanting to do the food challenge so I called the GI to make sure that this was okayed with him. SInce last I had heard he wanted her on nothing but formula for the next several months. We were scheduled for a soy food challenge on Friday and told him this. The allergist sent over all her tests and info on Wed. or THurs. and I never heard from the GI's office. So, we went for the soy challenge. Against my better judgement. She did okay in the office. Some hives and excema flare-ups but nothing severe. So, we went home and continued. At 5 pm, after the first bought of nasty diarhea, we got a call from the GI stating that he doesn't want her on anything but formula until he sees her again and probably for 2 or more months. I let them know they were about 7 hours too late.

Saturday morning she barely drank anything and she has been sleeping so much. Which usually means that she is getting dehyrated. Saturday night she was still having diarhea and the excema was worse. THe poo was like thick black coffee, that was my dh description. She had a seizure saturday night and woke up off and on all night. She cried from 3:30-4:30 or later. I can't really remember. She was so cranky on sunday and she keeps banging her head on everything.

I am just tired of these docs not communicating. She has had green beans before and not had a problem with them. We have had other foods come out whole but not green beans. I think it is time for us to go somewhere that will work with all her illnesses and symptoms. What would you do?

Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
I am sorry to hear this. HUGS!!!!!!!! If she is having black poop like coffee grounds, this is something possibly serious, she needs to be seen ASAP. Black coffe ground blood can signal serious GI bleeding.
Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
I mean black poop, not blood, sorry. It may be blood
Sep 30, 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.... :(
to be honest, I think hives and eczema sound serious! Any reaction is serious because next time, it could be anaphylactic. I really don't understand what the he** your doctors are thinking. I am so surprised they moved onto the food challenge so quickly. What is the rush??? Sebastian's food challenges were just pushed back at least another two months, possibly three. I am actually happy about this - he has 100 years to eat solid food and after the complete total hell he, I, and his daddy lived through before he went to Neocate only, I will do whatever it takes to make sure he is 100 percent ready to tolerate food. Honestly, I think it is best for you to listen to what YOU think is best before going through with food challenges before this happens again - it obviously would have been better to wait, and your doctor should have been available to tell you that. The docs aren't communicating, so YOU need to take matters into your own hands. That's what I did - I found this board (like you) and who knows where we'd be if I hadn't. Same goes for if we hadn't found Dr. Wood.

OK, a SEIZURE?????????????????????PLEASE GO BACK TO FORMULA ONLY FOR AS LONG AS YOU THINK SHE NEEDS IT. SHE WILL BE FINE. Sebastian has been formula only since July, and he is big, strong, healthy, and perfect. He is hitting milestones and thriving. Your baby doesn't need this food right now. She needs to heal, and she needs her doctors to get a freaking clue.

I am sorry to rant and rave like this - it just upsets me so much to see this happen to your daughter. I'm thinking of you.

Sep 30, 2008
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
oh man.. i dont have any ideas for you.. but i do have hugs!!!
Sep 30, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I think i have convinced my dh that we need to seek other medical help. I think after he saw her seizure on Sat. night and then heard how bad she was last night he is on board. Any suggestions? I know that several people on another board suggested National Jewish Hospital. What are some other options?
Sep 30, 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 dont have any advice, just hugs. well, as far as national jewish the 1st retard allergist we saw here in Michigan was trained there.. so, even though it is #1 for food allergies i'm not convinced.
Sep 30, 2008
jessicalynn
Brent 2 years old,
Birthweight 12 lbs 3.3 oz!
Very severe GERD,LPR,FTT
Severe esophagitis/scarring
Paraesophageal Hiatal Hernia,
Esophageal Dysmotility,
Food impaction,Aspiration
ALTE,Dysphagia,Odynophagia
Eosinophilic Esophagitis,Severe retching
Severe allergic colitis/malabsorption
Susp eosinophilic colitis,chronic diarrhea,
Laryngomalacia,Gas/Bloat Syndrome,
Visceral Hyperalgesia,GI Dysmotility,
Chronic infection(ear/sinus/lung)
Adenoid/tonsillar hypertrophy
Gait abnormality/bowlegs,widened growth plates
Susp Vagus Nerve Damage
Surgeries, Nissen fundo,hernia repair/
reconstruction,esophageal dilation,gtube,
ear tubes,adenoidectomy
Bronchs w/ BAL's,lung biopsy
Upcoming scope/colonoscopy
Manometry testing in Oct.
Meds: Nexium,Zantac,Baclofen, Neurontin,
Zofran,Pulmicort/Splenda,PrednisonePRN,
NPO tubefed continuous elecare 24 hours/day
I definately would seek treatment elsewhere, Cincinnati Childrens,Boston Childrens,Childrens of Philedelphia are among the top hospitals to head to. Cincinnati is at the forefront of eosinophilic research and treatment, as I know you are interested in, they would be the top place to go for that type of disorder, the even have an eossinophilic center.They have the leading Eosinophilic Disorder specialist, Dr. Rothenberg Boston is at the top of their game when it comes to treating complicated gastrointestinal disorders the highly reccommended Ped GI Dr Nurko is there. Philedelphia has all around great care, all are really good hospitals. HTH I dont know where you live, so I really am not sure if these are within reach..
Sep 30, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
Sorry, we are in Oklahoma. A small town just outside of Tulsa.
Sep 30, 2008
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
((HUGS)) I wish I had some advice for you, but I feel your pain about the doctor communication thing. It is exasperating.....
Sep 30, 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
i am so sorry to hear this and the black poop thing made me think GI bleeding too. I am shocked that you were supposed to continue soy after an immediate hives reaction. I would def seek another opinion!
Oct 01, 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 am actually surprised from all of her issues she dosen't already have a cohesive team of doctors. That is definitely something you need at this point imho! I didn't know green beans got digested they always came out of emily green bean like, a little worse for wear but you could tell it was a green bean. i guess now thats not normal... and what did the GI say about the coffee poop? tell the GI asap or any dr! poor thing i'm sorry things didn't go easier *hugs*
Check with your
doctor first!