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Oct 04, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Treatments used and using for EGID
Hi everyone. Can you share your experiences and treatments current and past for EGID. EE, EG, EC, and the others I can't think of.

I just want to educate myself and also help others as much as possible so as to do the best for our children in life.

Meggy can't have corn so most elemental formulas are out for her. I have yet to find one that is corn free, dairy free, and soy free.

Some days are great and u would never know she has a problem in the world. Other days are horrible and feel like my heart will break because I see her in so much pain and nothing I do can relieve it for her.

Meggy is back to 16 pounds 12 ounces.

Oct 05, 2008
kubicki5
Julie - I have three children. My youngest Katie is my refluxer. My first Ben was very colicy and is ADHD. My middle Jakob is pretty easy going. Katie had it bad as a baby no sleep for two years. She was on Nutramagin, Prevacid and Zantac. Thought we were through it but after age three it came back big time. After her scope she was put on Prevacid 45mg a day and mylanta as needed. Scope was in Sept. Showed damage in stomach and espophogus. It took about 7 months of medication and Reflux diet for her to start feeling better.
I don't have answers for you. Just wanted you to know that I feel your heart break and you and Meggy will be in my prayers.
Oct 05, 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
http://www.cincinnatichildrens.org/svc/alpha/e/eosinophilic/resources/faq/default.htm
Oct 05, 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
The above link is from Cincinnati Childrens Hospital, they are at the forefront of eosinophilic treatment/research. The main EGID treatment is diet change/elimination diet, next step elemental formula, which she cant have(though most kids with corn allergy are able to tolerate these), then meds.Is she on any medication yet for treatment? Sometimes it does take medication like prednisone to help reduce inflammation/eosinophils, for a short time just to help the body heal . I have posted a ton of stuff here on EGID, if you search back on my posts you'll find it. Many hugs and hoping she starts improving soon. Has she been tested for metabolic disorders?It would explain the poor growth as well.I see they may suspect mito( or has that no longer a concern?)why?, has she had the microarray or muscle biopsy testing yet?Muscle Biopsy(fresh or frozen) is the most accurate way to test for mito dysfunction, it usually involves problems in at least 3 or more different organ systems in the body.
Oct 05, 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 also wanted to add, in another post I mentioned this, there are pain meds to treat chronic pain if she is hurting really really bad on a daily basis. Elavil,Neurontin,Lyrica etc. Brent has to take pain meds, he takes a Neurontin, and Zofran several times a day every single day, it does help some with his quality of life/pain. It may be helpful for you to look into this, for some kids it makes a HUGE HUGE difference. If her pain is helped some, she may be able to eat better and not feel as sick. I feel so bad for Meggy, huge hugs
Oct 05, 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 think I posted this already, but we tried a mast cell stabilizer with no luck, and I should find out tomorrow if we are to start Prednisone. Sometimes the exsiting damage is severe and diet alone will not make much of a difference until the damage is addressed.

Jazz has lost weight again as well and now at 21 months weighs 19.10 lbs, very scarey for me watch her waste away. If I get anymore useful info tomorrow re: treatments I'll post a note for you....HUGS

Oct 05, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Thank you!

We know most kids who are sensitive to corn still tolerate elemental formulas as we were told by docs and requested to try several elemental formulas. The results were even worse than over the counter formula. It was a night mare.

We have not started anything of the nature of immuno-suppresants as Meggy is already considered immuno-compromised.

We did testing through:

http://www.pediatrix.com/body.cfm?id=3499

but that was considered normal.
We also did urine organic acids that had several abnormalities and was put off as probably secondary with no treatment.
The results had this "Mild elevations 2 ketoglutaric acid and medium chain dicarboxylic aciduria are probably secondary."
The first genetic clinic we went to refused to even see us back till December even with all Meggy's problems. The second is a one doc. practice and she is very nice. She says we will keep Mito at the back of the list for now and it has no treatment and would only be detremental to know.

She will do the other test for Russell Silver Syndrome and Meditteranean Fever and I forget what else first. She also wrote us a lab for Urine organic acids to take with us to the ER when Meggy has her next vomiting sickness because that is when Metabolic syndromes really show their face.

JessicaLynn,
I am sorry Brent hurts so much he has to take meds. I hope his pain is expected to stop soon. Do they expect he will outgrow his problems? Thank you for always sharing.

I did notice your post before, I was just looking for anymore ideas that may have popped up since. Brenda,

I am sorry Jazz has lost weight and is not responding to treatment. I hope tomorrow brings answers and hope. Thank you for sharing. She is beautiful though.

Oct 06, 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
Oh, I believe you on her not tolerating the corn , it just makes it so much harder. Brent could not tolerate any formula we tried, not even Neocate, or Splash, he got even sicker. He has done better with the Elecare, it's digested quicker and easier due to the fat source being 33% MCT oil. MITO isnt curable, but there IS treatment, I know a lot of families with children with MITO, and they all say, even though it hurts you need to know to get the best treatment possible.Very smart to have Meggy's blood drawn during illness, that is so true. I would also definately have her blood tested again when she is healthy and not ill and if it comes up abnormal again, I would push for further extensive metabolic testing.I know some about this sort of thing, but not as much as I do about GI stuff lol.You should post Meggy's history over at P2P one day if you get some free time, there is a mito and metabolic disease forum(plus an eosinophilic forum), the ladies are VERY smart, helpful, and nice.Ok enough of that talk.....As far as Brent goes, we have lots of dx's and lots of unanswered questions. Obviously we dont know what EE means for his future. His most serious issues right now are the esophageal dysmotility, his aspiration, and his lower GI dysmotility,retching,abdominal pain. He cant eat or drink, he's NPO because his esophagus does not work and it just builds in the esophagus until it gets over his airway and in his lungs, stoppping his breathing, it doesnt make it to his stomach.His stomach and intestines aremt working right either, he has to be fed drips of formula 24 hours a day.They think he has Vagus Nerve Damage, could be from several things. The Vagus Nerve controls the GI system and basically makes everything work. If it is damaged/paralyzed, nothing works right and there are bad consequences. It is not good news,permanent. He has a lot of pain, but it is a little better with the neurontin, zofran, he is also on baclofen which is a muscle relaxer. I was terrified to have him on these meds , but we had no other choice. I just dont know. It's scary to say the least.
Oct 06, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Jessicalynn,

Thank you. I would rather know if my baby Meggy has mito. I just have to be at the mercy of the ordering physicians and keep working toward answers and solutions.

I am glad that Brent tolerates the elecare. Is your insurance covering it for you? I hope so. I know from our trial on it how pricey the stuff is.

Is the P2P forum on this board somewhere or what?

I am not sure how much you are willing to try until enough is enough on your son, but has anyone ever suggested, or have u thought about alternative medicine? I wonder if acupuncture would help. For me it only hurt on the joints and right on the very top of my head. Then it was like an ant sting otherwise. The results were amazing and gave me 2 years relief.

What state are you located in and do you have help for his medical care?

Engi

Oct 06, 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
The P2P website is at http://www.parent-2-parent.com/forum/.There is a lot more extensive medical information there. Yes, our Elecare is covered by insurance, because he is tubefed only. Thank God because it sure is expensive, you are right about that! We live in North Carolina, and we do get help for him as far as his medical expenses go. Alternative Medicine is a good idea, but it really wouldnt help most the type of problems that he has unfortunately. I posted all of the things he has been dx with under my profile, in my story. Thank you so much for the idea though! What did you get the acupuncture for?
Oct 07, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
I received acupuncture because I was dealing with severe pain and nausea. I had carpel tunnel syndrome, neck pain, my knees no longer have fluid and have severe arthritis, migraines, foot pain, multiple food intolerances, and many other things.

Turns out most of it may have been caused by Lyme's disease of which I am currently on day 10 of a 3 months antibiotic course for.

The migraines were my worst. He would put what looked like a circle band-aid on my ear lobe at the bottom. It had tiny little ball underneath that applied pressure. When the migraine was worst, I would press this for 2 minutes and the pain would lessen.

Check with your
doctor first!