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Tzivia’s Story

TZIVIA’S STORY

Tzivia was born in 2001. Right after she was born she just screamed, to the point they didn’t want her in the nursery. Her first diaper was full of blood. When she was about 2 weeks old she was admitted into the hospital because she was below her birth weight. They kept her there till she got to her birth weight, which was about 2 weeks. From my experience with my older daughter I had a feeling it was EG as well. The doctor didn’t think so. At about 5 weeks old she turned blue after I nursed her and she was on my shoulder. They thought this was reflux so they started her on Zantac then. At 6 weeks old she threw up blood. At that point the doctor decided to scope her and rule Eos out.

At age 2 months the doctor scoped her and found that she had Eos in her colon. He had me stop nursing her and put her on neocate. She really never took enough calories in and was miserable all the time. The doctor ended up putting a NG tube in her trying to see if it was calorie oriented. She was even more miserable with an NG tube. They admitted her again to see why she was so miserable. They thought it was colic I thought it was the NG tube. They tried alimentum during that hospitalization and she broke out in hives and had bloody stools so the doctor saw that she wasn’t going to be one of these kids that will out grow it by a year. He ordered a G tube placement.

At the tube placement he saw that the Eos spread up into the duodenum so he switched her to elecare. She for the first time smiled but still wasn’t doing great. She also during that time had lost ground developmentally. Three months later he re-scoped her and changed her tube to a button. He saw that the Eos didn’t get any better with being on formula only. He then started her on steroids that October of 2002. She was on that until January of 04. She was in and out of the hospital with many episodes of feeding intolerances and viruses. She also had during the time of being on steroids several fractures, one elbow, possible hip, and foot. After she was weaned off the steroids she was doing okish we did one food trial applesauce, which by day 3 was a major failure. She continued to go down hill in tolerating her feeds. She during the time she was off the steroids would get weekly fevers of 38-39 Celsius. She was introduced to bolus feeds, which didn’t last very long.

Throughout that summer she was in and out a few times with viruses and not tolerating her feeds. I felt she was flaring the doctor didn’t think so he kept saying its 2 year old behavior. After many months of going on like this he finally scoped her and found that she had an area in the duodenum and had eos in the colon as well so he put her back on steroids in October of 04, after which all the 2 year old behavior disappeared.

In March of 2005, she got sick and stopped tolerating her feeds went into the hospital while there she spiked a fever and ended up having a blood infection grew gram negative rods (Pentoa) no one knew from where she got this. They put a PICC line in during this time she was still not tolerating her feeds and they ended up putting her on TPN and switched her to a GJ tube and fed her through the J and drained the G. She was doing fairly well after that hospitalization. (She was there for 7 weeks then. In October 2005, she was finally weaned off the steroids since then she has been getting one infection after another and she was having many allergic reactions to the antibiotics they tried treating her with. Since November she has had 4 ear infections, 2 MRSA staph, 5 strept throats (which we took her tonsils out), 1 sinus, 3, c diff, 1 pneumonia.

The end of May 2006, we had her tonsils out and less than 24 hours after the tonsils are out she gets pneumonia, she was treated for that and then she stops tolerating her feeds again and then she gets a really bad ear infection that wouldn’t clear up they then found out she had ORSA which is same as MRSA. She was put on IV Vancomycin and has gotten c diff 3 times. She has been since May in and out of the hospital every 2-3 weeks with different infections or feeding intolerances. She is now in the hospital November 06’ trying to get from J feeds to g feeds and onto bolus. So far she is doing well. Over the last four years she has been having many allergic reactions to medications as well as food she sneaks. The things that she has reacted to is Pcn, Biaxin, omnicef, zythromax, clindomycin, bactrim, Tylenol, prevacid, fentanyl, ciprodex, latex, iodine, emla cream, red dye, soy, milk, peanuts, bee stings, kids form of florastor, diethylene glycol (?), glucogon shot, red grapes and raisins.

She allergy tests negative to everything but has actual allergic reactions not just GI but hives, hoarseness, throat tightening, facial swelling. Tzivia still struggles with having to be in and out of the hospital a lot but she always has a smile and no matter what she has been through she always bounces back right away. Anyone who meets Tzivia falls in love with her with her great personality. Yes its hard for her to be in the world of food but we try to get her to focus on all the other great things in her life.