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Mar 04, 2009
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
Update on Adriane
Sorry, I haven't been around much but work has been hectic and Adriane has been sick. Which I know is nothing new to all of you. She has been fighting a virus of some sort since before Christmas. Then 3 weeks ago she got strep. Started on antibx and she was doing worse. She is still air trapping, air is getting caught in her lungs and she has to expell it very hard to get it out. It is mostly at night because that is when the bloating really starts. Everyday around 3 or so she starts bloating more and more and my the evening her belly is taught and full of air to where it is causing stress on her lungs and heart. Her respiratory rate goes way up and she is very uncomfortable.

She was finally dx with a UTI. She started the same antibx that she was on for the strep again. She is still spiking a fever and bloating. Back to the doc and another UTI. At this point, we are to keep her on the antibx for another 30 days until we can do two different types of ultrasounds and a VCUG. The problem is that her gut is so sensitive the 20 days of antibx is already causing a fluctuation between diarrhea and constipation. She will touch her belly and say boo boo. It is so sad. She wakes up screaming several times a night and her stomach is cramping. Her reflux is getting worse because of all of this. The hand gnawing is back and she is choking and puking even.

What is the harm of taking her off the antibx for a week or so and then putting her back on a week before the tests. She should still be able to get the test done because she won't have the infection then. I just don't know if her body can handle 45 days of antibx. As I write this I am in my classroom about to cry. It makes me so sad that I can't fix what is wrong with her. They talking about kidney damage and malnutrition issues. She is still on her infant formula because of her limited diet due to GI issues and severe allergies. What else can I do? Any thoughts?

Mar 04, 2009
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
((HUGS)) I'm so very sorry that you are still going through all this with sweet A. I can't believe they want her on antibiotics for that long!! Particularly a child that is prone to infection. It would seem to me that it might affect her tolerance of the antibiotic in future. I don't know.....I wish I knew more about UTI's. It is so weird that you mention malnutrition issues....I noticed in your fb note last night that she is still having the bloating. As you know, this is a concern of ours for Rory, and we were told it is because of malnutrition...of course, not by a doctor, only by the nutritionist. I am infuriated for you that you have to wait so long to get the ultrasounds and stuff done...well, that you've always been waiting, actually, for docs to get their you know what in order!!! I don't know what else you can do, because as you say, she has extreme GI issues and allergies. I'd say find a good doc, but pft....how does one do that?? I know you've been waiting on St. Louis for forever. I just feel so frustrated for you, especially having to watch your daughter suffer. I'm so sorry ((HUGS))
Mar 04, 2009
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.
we went through the same thing with emily, she had a kidney infection then another UTI. she was on antbx for 30 days b/c of it. Her u/s showed no damage VCUG showed kidney reflux. but i hope A has no issues in either of those tests. emily has the bloated belly, she tugs on it and says "hurt" she gnaws on her hand too. I have been giving her the mylanta chewable gas tablets, they see to help with bloating. In one of my other groups i go to they were talking about adding in digestive enzymes and aloe vera juice and vitamin E to help control stomach problems. i was thinking about trying the aloe vera juice with emily. I'll send you a link over FB. *hugs* to you and A
Mar 04, 2009
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
I am sorry you are going through this. As for VCUG my daughter has had this for repeated kidney infections and UTI's. It can be a very traumatic test for a young aware child. just so you know, even with sedation .My daughter had no damage despite some very bad infections of the kidneys, in addition to UTI's so she doesnt necessarily have damage if that makes you feel any better, they just mean that things like kidney reflux and CHRONIC UTI's put you at RISK of kidney damage. Lauren's belly bloats but its from the SIBO, so does Brent's from the dysmotility.

If they are concerned about malnutrition because of limited diet why have they not placed a feeding tube yet for supplementation?

Mar 04, 2009
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've had the VCUG - it's not bad really, but more uncomfortable than anything. As for the bloating and pain, have they checked her enzyme levels for absorption? The abx can cause GI upset (as you well know) and there are other ways to treat UTI's - cranberry, yogurt, probiotics, water, etc. This may sound crazy, but it the UTI didn't respond to the original abx, did they run a group b (beta) strep test for her urine? I had a UTI every 3 months for at least 20 years before they finally ran an extra test to find out the darn infection was in my URINE, not my bladder, kidney, ureter, urethra, etc...just a thought. Just praying for answers!!!!
Mar 04, 2009
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
Thanks for all the responses. I think every female in my family has had the VCUG done at some point in our lives. My oldest had one when she was younger than A and they found nothing. Which is good.

As far as her eating and feeding tubes go, we have always been told that the only way to go with her is IV feedings. I feel the GI has actually been threatening us with that so we quit bothering him since he says that she is as good as it gets for her. She would eat more if we could find more for her to eat. If she isn't allergic it tears up her GI or flares her reflux. Too many factors at this point. I feel like she is getting enough to eat and she is still on formula so why would malnutrion be an issue? They haven't done a colonoscopy. I have been pushing the same GI for a year and nothing. He did an upper endo over 9 months ago but didn't do any tests on the large intestines or anything.

When I talked to the nurse at the ped office she was trying todx her. It really irritated me. The initial urinalysis came back with an overgrowth of e-coli. They are saying this is the best thing for her. I called St. Louis today and am hoping to get something from there and the secretary for the head doc said that she would talk to him when he gets back in tomorrow. Maybe we will know something by the weekend.

She has already came to me several times and held her belly and said boo boo. I give her probiotics and water but she is allergic to yogurt. We were told not to give too much water because she has lost two pounds. Even though she is at a healthy weight still. It is the pain that makes me upset. That and the damage to her system by tons of antibx and not being able to breathe and her respiratory rate up every night. I have to burp her at night before putting her down. I have the last two nights. I rock her and pat her back like when she was a baby. It is kind of sad. Thanks for listening (reading). Jessica have you ever heard of them putting in a tube just to relieve pressure like that. My ped made a comment that it would have been nice to have that just to release the air.

Mar 04, 2009
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
I actually do know of a few kids, just a couple, who have had tubes placed just for venting.It may be worth a try if it is making her miserable for sure, and she could be hooked up to a farrell bag for constant decompression(thats what we have to do to Brent for his dysmotility/aspiration). First,I would want to know WHY she is bloating.. so if it can be fixed without something like a tube, she wouldnt have to go through that. When your talking about the bloating there are a few things possible: malabsorbtion(but would most likely be having weight loss),celiac,obviously food allergy/intolerance,Eosinophilic Disorders(which I would be wanting to get A checked for with her food allergies)aerophagia(air swallowing),rarely something like SIBO(small intestine bacterial overgrowth syndrome, treatment is constant potent abx)) which comes along with severe motility disorders, but can be caused by overuse of abx as well, and sometimes motility disorders themselves can cause the bloating because of the backup of foods..I think she really needs to have a repeat endoscopy and definately a colonoscopy for sure if she is still having so many issues with tolerating foods. I cant believe he hasnt done one on her already! Maybe HBT(hydrogen breath testing) for SIBO too.
Check with your
doctor first!