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Oct 02, 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.
Mast Cell Stabilizers for allergy/long vent
Have any of you used Mast Cell Stabilizers for your childs allergies? My brother in law is in Med school in Egypt and suggested these might be something to consider discussing with Meggy's doctors.

We had tried one new pediatrician so far. He was a total fluke. Said Megan is perfectly healthy little girl with no worries in the world and that her crying spells are just normal child hood growing pains. I got the first time mom speech and was told to stop worrying that all kids hurt.

So needless to say I had to go back to the old pedi today to check in for an aweful diaper rash Meggy has. It is bright red and has spots of blood. She has had such bad diarrhea that it is causing other issues. I was trying a thick desitin cream for it, but it is getting worse and spread to her backside.

He dismissed the rash as normal. Then he insisted that we put Meggy back in the hospital for failure to thrive and Tube feed her.

He said forget about her allergies till another time, that our main focus for now is weight gain. He insist she needs to be force-fed enough for catch up growth to at least the 25%.

I can't forget about her allergies! Wouldn't it be technically poisoning her to feed her food I know hurts her physically, food that I know is poison to her little body?

UGG!

Anyway, I guess I will give another new pedi a try. I just hope we can get in soon considering the diarrhea and diaper rash. The other one we just tried had a few weeks wait just to get in to see him.

We are being honest up front with her history. So far 10 pedi's said it was more than they were ready to take on.

Do you ever feel like no matter what you choose for your little one it is wrong?

I cannot wait to hear back from John Hopkins. We had trouble getting the x-ray from our local hospital to send to John Hopkins. These people are pretty territorial. Then we had to wait to find gas for a trip to the post office.

Oct 02, 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 can't help with the allergies, but that rash sounds like a yeast infection, which may be why the Desitin isn't working. Has she been on antibiotics lately? The best treatment we've found for yeast inf is Vusion ointment (by prescription) and letting H go without a diaper as much as possible. I think some moms on here have used over the counter women's yeast cream with success. Hope you have better luck with a new pedi - it definitely sounds like it's time.
Oct 03, 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!
I agree with the yeast for the rash. If you have no luck with an MD, talk to a pharmacist - we use lotrimin per pharm suggestion and ped's okay. You can also do apple cider vinegar sitz baths to help kill off the yeast, though I'd wait until the sores start to close up.

I would say report these MD's for their inability to see how ill your dd is. There's a reason that MD's go through all this training, and I have so much more respect for those who will give an honest "I don't know" than those that skirt the issue since it's beyond their training. Do none of these MD's read her file? HUGS!

Oct 03, 2008
maielise
No help with the allergies, but I can totally relate to the diaper rash. Julian would get them bad just like Meggy esp. right under his little testies.

My husband was working at walgreens and he couldn't keep this stuff on the shelf so we decided to give it a try since it sold so well and it turned out to be the best! It is called DRC (diaper rash cream) I only wish i knew about it when my elise was little.

Before the cream Julian would scream when he pee'ed because his skin was raw from the rash. Hope it works for you and meggy gets well soon!

Oct 03, 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'm really at a loss here except that I can't believe docs are saying they can't take her on. That's amazing....Hugs!
Oct 03, 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
Well, i can relate to the allergy stuff and I agree that you shouldn't force feed a child food that she can't handle. Her weight is low but my healthy child didn't weigh much more than that. I think she hit 20 pounds at 18 months old. She had no food problems.

I think the 25% is pushing it. Neither of my children have ever weighed in at more than the 15%. Not that A is a good measure but Meggy looks petite anyway. She reminds me a lot of my Morgan.

We avoided tube feeding with A for 16 months. All the docs kept pushing it and kept giving me deadlines and goals and I just knew that if I kept on what I was doing she would be okay and turn things around. She is now eating at least 24 oz of formula a day. I don't have any experience with the formula that you are using but perhaps you should try something different. Sorry, i'm not up on what you have tried thus far. I'm guessing you have tried the neocate. I know that A tolerated that for a while and now she is on something else. Where do you live? I'm just trying to think of a better doc that you could get her into. -Amanda

Oct 03, 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
Mast cell stabilizers are sometimes used in treatment of eos disorders, but the results arent always great. A lot of times, the childs symptoms seem to improve, but when they go back in and biopsy/look visually the damage is still there, works like a "band aid" helping symptoms but not fixing the actual problem. Then other times there are great results. A lot of kids use these as part of their treatment.. I see the siggy said she "might" have Eosinophilic disorder, you either have it or you dont. Have they distinguished between Eosinophilic Gastroenteritis or food allergy? WHat was her Eos level? The treatment for Eos disorders is different than the treatment for allergies. This is pretty standard protocol for treating EG: Scope, confirm dx, and note Eosinophilic Level Do extensive allergy testing. Remove all allergic foods Rescope in 3 months If not improved or worse, do top 8 elimination diet Some go ahead and start the elimination diet, because allergy testing is not great for predicting what will cause an Eosinophilic rxn, so even if a child tests negative on testing, the food could still be a trigger. After beginning Elimination Diet, Rescope in 3 months. If still not improved, go to Elemental formula only diet. Rescope after 3 months 95% clear on ELemental Formula only If still not improved, resort to adding medications. The rash does sound like a yeast rash. Yes, basically if you are feeding her trigger foods, yes, in a sense you are poisoning her if she has EG, because when the child eats a trigger food in allergic EG the body releases Eosinophils which then see the food as a parasite/bad invader and begin releasing toxic substances into the GI tract/organs which in turn results in tissue damage. Good Luck finding a great ped to take her on !
Oct 03, 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
Also, after you get a clean scope and the body heals, then you may start adding in food usually only one at a time,sometimes a couple, watch for rxn's, after 3 months on each food trial, the child is rescoped, if theere are no eos, this is a "pass" and this is a safe food, if there are eos then it is a fail and the food is removed. It is a loooong process..
Oct 03, 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
One more thing... this ultracare powder she is on is not an elemental formula, it has intact proteins.Plus there is this waning on it:"This product is produced in a facility that produces products containing soy, fish, dairy, and crustacean shellfish." She is allergic to these things!!! There is a risk of cross contamination, even if they clean up and all that good stuff..Thats why you dont see eos kids on this stuff, because it isnt safe. She needs to be on neocate or elecare. I hope she doesnt need a tube, but trust me, if she has to it will be the best thing for her. Hugs!!! These are the top 8 foods:wheat (gluten), milk, eggs, fish, shellfish, peanuts, tree nuts, and soy— These are the top eos triggers:Milk, egg, soy, corn, wheat, beef, chicken, peanuts, rice, potato, oat, barley, turkey and pea.
Oct 03, 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 for the support everyone. We got in touch with John Hopkins again. We will be heading that way in 6 weeks for another endoscopy and her first full colonoscopy.

Donnessa,

We were trying a couple different creams and then when it got really bad we tried vusion with no results. Can't remember when but within the last month she was on Omnicef.

Slimfast13,

I hadn't heard of the Apple cider sitz bath, but will have to try that.

Thank you for supporting my feelings on these MD's. I am horrified at some of the things they tell us. This one flat out told me I am a bad Mommie for refusing admission to one very particular hospital.

Maielise,

Thanks for the info on DRC, I will have to see if I can find some. For some reason the vusion isn't working. It usually clears things right up.

Mom2adrian&morgan,

Thanks for sharing about your children's percentage. So, was this just their normal built. I think Meggy is going to be a little person. I am okay with this as long as it is not caused by her pain.

Jessicalynn,

The reason we were told to try Ultracare is because it is a night mare when she is on anything with even a minute amount of corn or corn product. Also sense she she is allergic to soy and milk, there are not much more to choose from.

Elecare was her absolute worst experience. After months free of projectile vomiting, we tried this and she vomited everytime she even took a sip. Next was followed by Vital JR. She lost weight with that one. She cried and cried and cried. after 2 days on that stuff she totally refused to take anything other than water. Neocate was not much better at all. She vomited the whole week we were on this one. Just recently we tried Neocate E028 splash. She did not take much and what little bit she did take, she vomited.

With over the counter formulas, she tolerated Goodstart the longest at 3 weeks. Then Alimentum ready to feed the next to longest at 2 weeks. (this is the only over counter corn free formula) We tried all the soy formulas. We tried every kind of Enfamil formula and every kind of similac formula over the counter. All with no success.

The only reason we can figure out she reacts worse to elemental formulas is because she is super sensitive to corn, and they have more corn than anything else. Even the broken down form.

Her John Hopkins Doc suggested today that we need to have her checked for intussusception. From my understanding it is similar to malroation just different location.

Oct 03, 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.
Jazzy is on a mast cell stabilizer med. They are suppose to work but in her case I beleive it is causing her to have a burning sensation in her throat so now she's not eating...... See post above "what to do..." BTW- the Med is called Sodium cromoglycate.
Oct 03, 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
There is also vivonex, its elemental. Good luck on the scopes! Oh, and you can actually treat yeast rash with lotrimin cream from the store HTH
Oct 03, 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
That is just Morgan's build as far as being small. She is still small. I'm not but when I was her age I was. I was 3 months premature. She still only weighs 34 pounds soaking wet and she is almost 5.5 yo. I just think some kids are built smaller. Is she on the chart at all? I guess would be my question. Both of my girls have been 2-3% for most of their lives.

As far as the formula goes, have you let her gut rest? I know that we don't like to not feed our kids but when A was going through all the formulas part of the problem was that her tummy was so upset it couldn't take anything. The doc had us keep her off everything, granted we had to be in the hospital to get her IV fluids, for about 4 days or more. Then we started very little bits of neocate every hour through her NG tube. for about 3 or 4 days. We gradually increased her feedings and she got better.

Have they done an ultrasound? Pyloric stenosis? I'm just thinking of all the things that A was tested for. Just throwing stuff out there. -Amanda

Oct 03, 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.
B-girl,

Thanks for the name of the med. I will have to ask about it.

Jessicalynn,

Thanks for the name of the elemental formula. I will have to look that one up. Haven't heard of it. I hope that it is corn free. I will have to check on the Lotrimin cream too. The Vusion is $35.

Mom2adriane&morgan,

I am glad to hear about this just being Morgan's build. Meggy has not been on the charts at all since she was 9 months old. Although if we plot her on an Egyptian growth chart (her daddy is Egyptian) she is 50% for everything.

I wouldn't be so concerned for her % if it were not for the pain. We have brought up the pyloric stenosis, but everyone says if she had it, there would still be vomiting. DH had that as a baby. He was also a poor feeder and had trouble gaining weight.

We did several periods of rest for her gut. Some 2 days other 11 days with temporary results. We have also had an abdominal ultrasound that was normal.

Today she saw the nephrologist who said kidney wise she is fine. She said if her C02 goes down from 19 to 15 or less we will have something to worry about. Well, we got some of the results from John Hopkins today after getting home from the neph and the CO2 was 15 so I am not sure if I should call back and let her know or just mail the results.

Thanks for all your help and support.

Oct 03, 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 JUST heard about intussusception and was going to mention it to you....but it looks like you already have a dr looking into it. I hope hope hope you find an answer soon.
Oct 03, 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 hope they have the answers at Johns Hopkins to help her, poor little Meggy. Huge Hugs to you! There are some pain medications to treat chronic pain, I really think you should look into them if she is in that much pain every day. Elavil, Nortriptyline,Neurontin,Lyrica are all examples. My son has to take Neurontin to treat chronic neuropathic pain from visceral hyperalgesia, it does help some with the pain.. Looks like Vivonex has corn, sorry.
Check with your
doctor first!