Posted By Posting
Aug 09, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Wanted to formally say hello and introduce myself!
I have been posting here a little, and I thought I would post and officially say Hi:) I am just going to paste what I wrote under my story to tell you about our situation, since it took quite a long time, and Brent has decided he was going to awake from his nap. Nice to meet every one!!! (pasted from my story) Hi! I am Jessica, and I am from good ole' North Carolina. I have been married almost 11 years to my husband Roy, and he is in remission of stage 4 hodgkins lymphoma. He has been doing well since he finished a very long year of chemotherapy,invasive testing,surgeries, and injections.He was very sick as the cancer had metastasized(spread) throughout his oragans, and he was very close to death. We are hoping he will continue to do well and stay in remission. We have 4 children. Trey is 8 and he has GERD,irritable bowel(controlled with diet possibly may be introducing meds) and allergies. He takes Nexium,Miralax and Zyrtec. Trey sees Ped GI Christian is 7 and has GERD, slow transit dysmotility/chronic constipation,allergies,asthma,pediatric migraines(awaiting neuro consult) ear tubes. He is on Prevacid,High dose Miralax,Singulair,Albuterol. Christian sees ped GI,ENT,will be seeing Ped Neuro. Lauren is 6, she has bad GERD,slow motility,chronic constipation, bloating,chronic stomach pain,allergies, milk allergy,asthma,recurrent UTI's,ear tubes. She is on Nexium,Zantac,Reglan, Miralax,Zyrtec,Pulmicort,Albuterol.Recent scope biopsy showed reflux damage despite being on 60 mg prevacid. Lauren sees, Ped GI,Asthma/Allergy spec.,Ped urologist,ENT Brent is 2, he was our post chemotherapy "your husband is sterile you cant have another baby" surprise! He was born weighing 12 pounds 3.3 ounces, and to everyones surprise was immediately stricken with poor health right after birth. His story is a long one, putting it simply he has been in tremendous pain and very sick ever since he was born, and we are still going through it to this day, we have a lot of diagnosises but he has no relief. He has so far been dx with Very Severe Primary GERD, scarring/severe esophagitis,Laryngopharengeal reflux, HUGE paraesophageal Hiatal Hernia, severe retching, esophageal dysmotility,GI dysmotility, FTT,ALTE, severe allergic colitis/malabsorbtion, aspiration, gas/bloat syndrome, visceral hyperalgesia, chronic ear/sinus/lung infections, laryngomalacia, dysphagia, odynophagia, Eosinophillic Disease,cobblestoning of trachea,chronic diarrhea,gait abnormality/bowlegs/widened growth plates,adenoid and tonsillar hypertrophy,sensory processing disorder,chronic dehydration,food resusal Hes had Nissen fundoplication/surgical G tube placement/very large trapped Hiatal Hernia repaired/reconstruction, esophageal dilation bronchoscopys w/ lavage/biopsy,endoscopys w/ biopsys,upperGI's,Modified barium swallow studies,barium enemas,blood tests,adenoidectomy,ear tubes, many chest xrays,stool tests. Tried and failed Bf,Enfamil,Soy,Alimentum,Nutramigen.and even was allergic to Neocate and EO28 Splash. Reactions to all were pooping diapers FULL of blood, mucus(no visible stool, it has been very scary) profectile . vomiting,rash,dehydration,diarrhea.Tried duocal,didnt help. Brent's Dr Team:Pediatrician, Ped Gastroenterologist,Ped Pulmonologist,Ped Immunologist/Allergist, 2 Ped ENT's, Ped Orthopedic,Ped Surgeon, Ped Endocrinologist,Occupational Therapist,Speech Pathologist/Therapist,has also seen metabolic when inpatient. Multiple hospitalizations/ prior NG tubefeedings NPO 100% tubefed Elecare formula because of aspiration/EE Meds: Nexium,Zantac,Baclofen(motility),Neurontin(for nerve damage related chronic pain disorder Intestinal hyperalgesia)Zofran(every 6 hours daily for severe nausea/retching)Pulmicort/Splenda(swallowed for Eos) Claritin,Miralax(rarely),Prednisone (as needed for GI inflammation)Tons of ABX for chronic infections, Albuterol for wheezing, I could go on and on... Needless to say, I feel like I am a full time nurse! I am always tired but I love to share info if I can help others.
Aug 09, 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
Bless your heart! You are going and have been through so much. I pray for your husband for him to stay in good health. Welcome. We are so glad you are here. I don't have much to add right now but I can't wait to get to know. Feel free to come here to vent-about anything, ask questions or offer advice. This forum has been such a life saver for me! I have learned so much. Keep on postin!!! I am from Texas.
Aug 09, 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!
Welcome. You sure have been through a lot with your kids! I am sure you will be an asset to these forum and we look forward to getting to know you!
Aug 09, 2008
acony bell
Jesse, Mommy to:
Joseph William, 2/19/2007.
Diagnosed *finally* with GERD at 11 months. Stopped pevacid at 2.5 years old.
Lilybelle, 3/11/2009.
Another kid with REFLUX! Upper GI on Monday. PH Probe and Modified GI in a few weeks. Currently takes 7.5mg Prevacid once daily.
Wow. You are an amazing woman... just to survive it all and not run away. Last year was the hardest year of my life with my little GERD man. I cannot imagine coping X4. I am pregnant again and say a little prayer everyday that this baby does not have GERD. Nice to "meet" you. We live in NC too.
Aug 09, 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! You're a strong woman and mom! You have humbled me...I'm sitting here stressing about teething!

Do you mind telling me which part of NC you live in? I live in SC.

Aug 09, 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
I don't know how you've kept your sanity. Your kids are lucky to have such a devoted mom. I pray that your dh continues to do well - it sounds amazing that he is recovering! We're very glad that you're here and look forward to knowing you better.
Aug 09, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
We live about 30 minutes outside Wilmington, in Pender Co. Basically in the middle of nowhere lol.
Aug 09, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Yeah it does take a toll on my sanity... but the older kids are " manageable". They have issues but they arent life threatening, and medication helps. My oldest Trey has improved a lot on Nexium and watching his diet, Christian has just recently been diagnosed with slow transit/dysmotility, so we are working on him. He gets completely backed up with poop until it fills his whole abdomen and makes him sick, he has had this issue since birth though..He does seem to be improving since his clean out, we went to high doses of miralax, and increasing the prevacid. Lauren is a bit trickier than the others, because her reflux is STUBBORN, and doesnt respond well to meds. It has been determined to be the trigger of her asthma, which recently has been quite severe, and she has been on oral and injected steroids,back and forth to the ER.. Right now it seems to have calmed some, I am praying it will not flare back up anytime soon.Her chronic constipation responds well to high doses of miralax though, thank goodness.She still has a rough time though. It just all adds up to be A LOT. Brent is the one that I have a really hard time with right now...:( He is the best little boy though, he is so sweet:) It is amazing how well my husband is doing, and it is amazing he survived.He was only 24 when we found out, we were very young, and naive in a way, you know, it was such a shock, the reality of it..We feel really blessed by his recovery and hope more miracles are on the way.
Aug 09, 2008
amber f
I couldn't imagine all you have been through! (((HUGS))) Nice to meet you though.
Aug 09, 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 my. you have been thru so much! i dont have much to say but welcome. and, i'm sure that a lot of us will be benefiting from your knowledge.
Aug 11, 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.
Just wanted to welcome you. I can't believe what you have been dealing with. How are YOU?? My little guy is also 2 (2 1/2 to be precise). He is still having issues & undergoing more testing (endoscope/sigmoid) next Wed. Most of his reflux/asthma problems seem to be allergy related. Do you or your husband (or family members) have allergies/asthma? There seems to be such a strong genetic link in so many cases. I'll be looking for your posts & praying for you all. Ellen
Aug 11, 2008
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Thanks everyone for the warm welcome:) Yes, I have bad allergies and had severe asthma as a juvenile, it has lessened to where I dont have as many issues with it now,just once in awhile, still have horrible allergies though...
Check with your
doctor first!