This website contains information that may not be duplicated or used for any purpose without written permission from the owner of this site. This document is protected as an unpublished work under the U.S. Copyright Act of 1976, as well as under all other pertinent domestic and international intellectual property provisions. February 1, 2007 So Nitara is three years old! Part of me is very sad to still be contributing to this journal. I had hopes that by this age she would be off her tube and eating normally and cured. But it is not to be. Part of me is rejoicing that my daughter, in spite of her health issues, is growing very well, strong, and appears to be fine in every other area of her life. Nitara's birthday deserves a do-over. She had been sick all week with a fever, and so had Abi. Nitara kept crying that her knees hurt and would not leave the couch. In the middle of the week her temp spiked to 106. I rushed her to the ped. He was concerned about the fever and the leg pain together. He gave it 24 hous to resolve. The next day she had a 102.8 fever so back we went. He gave her a shot of antibiotics and sent her off for blood testing. One of the tests was for leukemia. Thank goodness, they all came back normal. That was on Friday. Her temp returned to normal. On Saturday, her birthday, the fever was back. She was just not doing well. I made an apple crisp for her birthday "un-cake" and she looked at it and started gagging and recthing and said it smelled bad. Her tummy was just not doing well. She had been on clear fluids for a week, 50% formula for the next week. She opened her gift and enjoyed that, and blew out the candles, but we were all left with a feeling that here we were, three years later, and not much real progress. After talking with some parents in a local eos support group, and talking with the GI nurse before that, I have decided to take Nitara off all foods for a couple of months to see if she gets better with the vomiting and stuff. It's the only way we will know for sure if this EE dx is "it" or if there are still other things going on. Nitara's only food right now is shaved ice. I have some flavor packets from her elemental formula that I can add to the ice for color and flavor. She has been asking for food the last two days, saying she's hungry, crying when we say she can't have food. She has never been refused food before so I think she wants it more now that she can't have it. She ends up settling for "snow" or water. She is going back to the GI at the end of the month and we can talk about what to do next. I am busy fighting the insurance appeal letter. They have agreed to 50% coverage but our half is still way, way expensive for a single income, student family of four. It should be an open and shut case about Nitara needing this formula, but they are not required to pay for it. As it turns out the new formula legislation only applies to non self-funded plans. Ours is a self-funded plan so that's that. I am writing one heck of a letter, along with some photos of Nitara, a newspaper article about a boy with this condition, and a copy of the new state law. Also will include letters from her doctors stating why they feel she needs this formula. Today we met with a very nice nutritionist who is going to try to help me come up with a blenderized diet. This probably won't be used until Nitara gets a clear scope but it's good to have in an emergency. We have enough formula through donations and ebay to last a few mos. If we don't get coverage after that time we will be forced to supplement the formula we can afford with a blenderized diet and will will pray that she's not allergic or irritated by any of the ingredients. I look back at my old blenderized recipe and at those pictures of her eating things like pizza, and ice cream with nuts(!) and I cringe. Here I was encouraging her to eat and cheering her on and even pressuring her at times, and was probably making things worse for her all along. Gulp. I am also beginning to realize just how confusing it is to read Nitara's signals. She clearly has gastric distress and has from infancy. But now I can't tease apart when she is psychologically afraid of food or when she's really physically feeling bad. I am not sure she is able to do that, either. I am not even sure if her brain is wired correctly to know the difference between hunger and nausea, or fear of voming vs. needing to actually vomit. The nutritionist asked me if maybe she's trying to vomit on purpose. I don't know. I don't think so, because she will usually walk around panting and looking really distressed and trying very hard not to vomit. Then sometimes she'll feel better and not vomit, and other times it will come out like an explosion and she will cry and cry. There are times when I know her stomach is empty and she will tell me she feels like vomiting. There are times when she has food in her that she will tell me she's hungry. Sometimes when I hook her up for feedings she will say "I feel like vomiting" even before I have turned the pump on. I'm so sad that she is this programmed to think food is bad. I'm sure that it's because of past experiences with food and vomiting her whole life. Who wouldn't automatically gag at the sight of food after waking in her shoes? The miracle is that on her good days, she actually wants to eat at all. Here's part of my birthday letter to her: You are three years old! Such a big girl, stepping out of babyhood and into your own. Right now you are discovering so many things. Your absolute favorite thing to do is feed the ducks. You like to play with Barbie (especially the baby one), you love baths, you are learning how to do large jigsaw puzzles, you are a great finger painting artist, and you are just starting to draw figures we can recognize. I am so honored that the circle with the two legs and squiggles in it is a picture of me, and the little circle standing next to it is you. It seems that since the beginning I have been trying to hold onto you so hard, afraid I would lose you if I relaxed too much, or took things too much for granted during your healthy periods. When I was 23 weeks pregnant you tried to come the first time. I spent the next twelve weeks on the couch, counting contractions, getting shots when needed. Praying and counting down to when we knew you would survive. We gave you the name Nitara because it means "has deep roots." You held on with those roots and were born at 38 weeks. We thought the hard times were behind us. We did not know what a journey this would be for us, and that the journey was just beginning. I don't know the whys of all things. I just know that each child comes into the world with a path they were meant to follow. And this is our path, together. February 25, 2007 a) Nitara's final path report came back and showed greater than 100 eos per slide!! This is a very big number! The initial report showed 20 eos, but this was sent to Children's and they were able to get a more accurate count. She has 50 eos in another part of her eosphagus, and it showed thickening of the tissue. No wonder she was gagging and having a hard time eating! I feel that this disease needs to be taken very seriously and we need to try to clear this up. I am more determined to severely limit her food until we get better numbers. Hopefully zero. b) they are not sure why she's having leg pain and were unaware of the connection between leg pain and EE. I emailed the nurse a copy of the poll taken on the EE support group showing the survey, and some parent comments that flare-ups seem to go hand in hand with leg pain. Of course hers could be from anything-- growing pains, something else?? I need to get her into an orthopedist and rule out other things. Poor girl is really suffering. The other day she cried and limped along and said she couldn't walk anymore. c) We are going to start her on Reglan to help with the nausea during feeds. The doctor feels that she does have some motility issues based on her variation of BM pattern on just formula (every five days with firm, followed by 2x a day of very loose). The Reglan appears to be helping already, although it makes her tired. I am also cutting her feeds down to 3 feeds a day of 180mL each. She is tolerating this much better. It would be great to eventually get her off the pump but that is probably a long time from now. d) To prevent further oral aversion we are going to let her have rice. I have found a rice cake with just rice and salt, and she can have cooked rice with a bit of salt added for flavor. That's it for now. The nutritionist feels that Nitara needs more calories than she is getting. Perhaps we can raise this with having her eat some rice-- although I personally think her growth is great. She is 95% for height and 83% for weight. e) Her next scope/biopsy is April 23rd. Until this gets under control, unfortunately scopes will be a regular part of her life.
Then later in the week Nitara saw the allergist and was officially diagnosed with asthma. I had suspected this for about a year but it's been getting worse lately. She was prescribed Singulair. I really hope it helps her. She just huffs and puffs. She was given an inhaler but so far I can't get her to use it or the spacer. Every day I am having her put her mouth on the spacer for practice. The first day I got her to only kiss it. Today she put her mouth over the opening but only for a second. She gagged the first time but then did okay. It's going to take some time. If she won't take it we may end up doing a neb machine. She is going to get a patch text in a week for rice (again), apple sauce, potato, wheat, and some foods I hope she can eat after the scope (if it's clear) including brocolli. My feelings: I am sad that she has all these things, but I'm also relieved that we have a NAME for her problems! I hope that in a few years there will be a drug to help it. I am grateful for the formula and the doctors and all the things we are trying to do now to provide her comfort and healing. I am thankful for the formula donations, and I am thankful that we only pay $300/month when the samples run out. $300 is a LOT but it's better than full price. April 11, 2007 Nitara is doing really, really great! Looking better, gained too much weight, happy, finally sleeping through the nights, handling common illnesses so much bettter. Yipee! And no more vomiting! I got her to actually drink her formula!! Not much but to get her to drink any is a miracle. But now she's back to not drinking any unless I give her an appetite stimulant, and I am not thrilled about that idea unless there's a chance of a full tube wean. She is at least tolerating fast feeds. No more spending 3 hours to get a feed. Now it's more like 30 minutes. I hope it lasts. Nothing seems to last with Nitara's health. I don't want to sound down. She's overall doing so much better. It's not the miracle cure we were hoping for but it's making life easier for us all to keep her on the formula and very severely limited diet. Nitara saw a pulmo and the asthma dx was confirmed. She's starting on Flovent and it's already helping after only about a week. I have joined the EE community. There is a great local support network. Our insurance has agreed to pay 100% of her formula costs! The catch is that for the first $2000 they will pay 50% and we pay 50%. After that they pay 100% until their cost is $5000. So we will be paying about $2200 total per year. I hope she can start to eat foods and supplement this formula. We are applying for Medicaid for her, long-term care to supplement our insurance coverage. I think she has about a 50% chance of getting it based on what I hear from other parents. Just 1.5 more weeks until her scope! I hope and pray that all our hard work pays off, but I don't think hers is going to be clean with all the dust and pollen blowing around. I think it will be better though. August 20, 2007 It's been a long time since I updated! We were having some computer program issues, plus life just got busy.Nitara's scope in April came back clean!!! Just 2-3 eos per high powered field!! This is a huge improvement. She was able to keep broccoli, carrots, and potatoes. We then tried her on apples and she's been on apples for several weeks with no apparent problems. Rice was a failure. Wheat and soy seem to be okay but only a scope will tell for sure. She has gone three weeks on both of them with no apparent problems. In June we went to India and we all survived. Nitara lost some weight due to a faulty batch of feeding tubes and a pump that broke about halfway into the trip. The last week we spent vomiting (she and I). Thank goodness for that Zofran prescription I got before we left for our trip! Nitara is doing great in most ways. She is much, much healthier overall. She does not get sick as often, and when she does she fights it off normally and does not take weeks to recover. But all is not peaceful. Nitara has always had some constipation issues but it only got bad sometimes. Now it's a reall struggle to keep things moving. on a regular basis. She ended up in ER again because of servere stomach pain. Also ended up in urgent care when we got back from our trip. We are still experimenting with what works best for this, but so far Benefiber plus a small dose of milk of magnesia is keeping things under control. The second problem is vomiting. It came back with no change in diet. She had several months of peace followed by clusters of vomiting episodes. This has been going on her whole life. The PA in the GI's office mentioned cyclic vomiting syndrome. I have read the symptoms and she seems to fit them like glove. It takes time to dx this and rule out other things it could be though. In the meantime we have more Zofran. If I give her a dose right at the first sign of vomiting we can usually break that cycle and get on with life. I am half suspecting that she vomits because of apples or wheat, but she has periods of peace where she eats those things with no suffering or swallowing problems. They day before her last scope she had a vomiting episode but still scoped clean of EE. There is something else going on. In late July I went to Utah for a conference of The American Partnership of Eosinophilic Disorders (APFED). The conference was life-changing and amazing. I met many other families of kids with EE and related disorders. There were kids running around with tubes and feeding pumps in little backpacks. Some teens had a panel and described what it felt like. One said, "It feels like strep but ten times worse." There were some interesting presentation by world experts-- researchers and doctors. I learned a lot to take back home to Nitara's GI. One thing I learned is that (gulp! sob!) she is NOT going to outgrow this. It's a chronic, lifelong disease. Period. That's it. We will manage it the best we can and pray for a magic pill to come out someday. We are not focusing on tube-weaning anymore. In fact we are pretty sure that she is going to need her tube for a long time to come. Instead, we are focusing on getting her to drink some juice and eat two meals a day. The meals are very small, but it keeps her chewing skills up and lets her enjoy foods. Her current favorite is hash brown cakes. She will drink apple juice if I insist on it but doesn't care for it much. Oh and surprising news-- I have mild EE myself! I got bipsied and I have eos in my esophagus. The biopsy was not done real well and it took two trips to pathology to find the eos that they did find. I showed all of it to Nitara's GI as well and she is confident I have it. I have rings in my esophagus. Symptoms are different in adults (food slow going down, chest pain, heartburn pain, food impaction in some) which is why it took me awhile to put two and two together. I do not have any food allergies so mine is probably from pollen. I take swallowed Flovent and am feeling much better. I didn't realize how bad it was until I started to feel better. My sister in law also has it, we strongly feel. She has actual food impactions, had eos in her blood as a child, has the same chest pain and stuff that I do. She suffers a lot with her diet and is now strictly avoiding foods. She has it way worse than I do. Unfortunately her doctor did not do biopsies in India. We are just assuming she has it based on her history and my husband's history of infant feeding problems, too. What are the chances that two people from opposite sides of the globe would carry the gene for a disorder that affects only 1 in 10,000 or so people? Nitara is an active 3.5 year old girl. She loves to color, play My Little Pony, Littlest Pet Shop, and she and her sister are best friends. Nitara is going to start preschool next month three days a week while I study. She knows most of her letters and the sounds they make and is beginning to write letters and counts to 20 (skips 16). We are so thankful that she's able to have some kind of life. She did have a mental breakdown in the middle of vomiting episode saying, "I'm so tired of having a sick tummy! I wish I had a better tummy. I wish I didn't have a tube!" It was heartbreaking. After it passed she went back to her cheerful self. After that I started giving Zofran if she even says she feels like vomiting and is looking a little green. I would say all things considered, she has a pretty normal life. Which is where I want her to be. Her next GI appt is at the end of September with a scope probably in early October. I'm hoping and praying we can keep wheat. September 5, 2007 I posted this on a parenting board tonight I missed it but close enough. Today I'm going to focus on the
positive. |
