Jul 10, 2009

Help with Addy's Medical Issues

Ok, I know it's been a while and you are probably hoping this is a happy post about how well Addy is doing, and trust me... in most areas, she is excelling. She's talking a ton now and even asked to sit on the big girl potty today. She wore piggy tails for the first time today and I'm loving being home with her every day. She loves library books and riding in her wagon. We're looking forward to a long weekend at Granny Camp next weekend too. (She's staying with Grandpa and Granny Harlow while mommy goes camping with her friend Angie). But, I'm feeling frustrated and I just contacted a doctor who specializes in wholistic medicine with the info below. I also posted it on IndyMoms. com. I want to get the info out there so lots of people can see it in hopes that someone out there can help us find the answer. So, much of this will be repetative and tell you things you already know, but I wanted to put a lot of info out there so maybe it will trigger someone to have the answer or can point us in the right direction. I'm wondering if there is an underlying medical problem that could be causing these issues/symptoms... maybe something rare that the docs aren't seeing or connecting the dots. I'm tired of waiting for her to grow out of it, so I'm hunting down the answers. Please Please Please pass this info on to anyone that might be able to help. I'm open to any and all suggestions.

I'm really feeling overwhelmed with the issues Addyson is facing and the lack of answers from our traditional doctors. I'm hoping that putting this out there will help me reach some help.

Addyson was born April 25, 2007 at 25 weeks, weighing 1 lb, 7.9 oz, 11 1/2 inches, due to my fight with pre-eclampsia. They took her by emergency c-section at IU Hospital and she was rushed over to Riley. She had a PDA ligation within the first few weeks of life and was intubated for a good portion of the first 2-3 months. The ventillator and oscillator as well as the c-pap prevented her from nursing and or taking a bottle, so an ng tube was used to feed her. I pumped for the first 9 months of her life and she recieved this with fortifiers. The doctors sent her home from the hospital 4 months after birth with an ng tube because they said she was probably aspirating the bottle. They never did any tests at that time to confirm. She was also vomiting a bit and they said it was reflux, medicated her and never did a single test. A few months after coming home, we requested a swallow study to see if we could start trying a bottle. By this time, she couldn't figure out how to suck/swallow and they told us that the tests showed that the formula was pooling and she was aspirating. We asked how long it might be that we were on the ng tube... they said it was hard to say but that it would be a while because we'd have to wait until she stopped aspirating before we could try to feed her by mouth. We decided to get a g-tube inserted so that she could lead a more "normal" life without that ng tube being inserted at every feeding and fighting with her about it. It was a real struggle to keep that ng tube in and she would pull it out dozens of times a day. It was causing her to not want anything near her face. At this point, we were using Neosure (a preemie/infant formula).

The g-tube was placed in November 2007. We are STILL using the g-tube for 100% of her nutrition. She doesn't chew/swallow well at all. Basically, she'll drink water and sometimes juice/milk. She'll put just about anything in her mouth, move it around, and spit it back out... it's almost as if she doesn't know how to chew/swallow. But, even worse is her chronic vomitting. Addyson has vomitted daily, sometimes up to 3-4 times a day, sometimes once, sometimes once every two days... basically her whole life. There seems to be NO rhyme or reason or pattern or trigger for the vomitting. We begged for Riley to get some GI tests run... I couldnt' get anyone to refer us, so I called myself. Dr. Fitzgerald ran a number of tests and reported that all looked normal and that there wasn't anything he could do for us. The developmental team at Riley (Dr. Dusik) was not very helpful. They told me all along that her Reflux was normal and that I'd just have to wait for her to outgrow it. They had her on lots of reflux meds until we saw GI. None of them worked. After the GI tests were done, we learned that reflux was not the issue. We discontinued using all the reflux meds. Developmental basically told us that we needed to have weight checks every two weeks and that she wasn't gaining enough and that they were very concerned. Obviously we were too, but we couldn't figure out what to do, the more we pumped into her, the more she would vomit. They were not helpful with formula changes or testing to see what the problem might be. The nutritionist at Riley basically told us we were neglectful. In all other areas, Addy's development was coming along very well, her height to weight has always been good, her head circumfrence is good. Obviously, being such a preemie, we had occupational, physical, and now speech therapy to assist with minor developmental struggles, but that's to be expected with such a preemie. At this point, Addy was about 18 months old and they still had her on Neosure. I continued to question them about this choice, but they assured me that it was the right formula for her. At this point, I had requested allergy testing to make sure she wasn't allergic to anything... they ran tests on the most common allergens and they all came back negative.

We decided to seek a new developmental doctor at St. Vincents. Dr Escobar was very understanding. He charted her height/weight on a PREEMIE chart, which made a huge difference. He said that he wasn't as concerned with her weight, that she seemed to be developing well. He did suggest a blended diet and a switch in formula. We currently use Boost Kids (45 cal/oz) and also blended food. He really wants her to be getting more calories, but we're not sure how do get them in her since she continues to vomit with increases. She receives 8 oz of the formula mixed with 2 oz baby cereal and 2 oz juice or smoothie mix on a pump through 8 hours at night. She receives 8 oz of the formula mixed with an adult size serving of a protein (usually Carnation Instant Breakfast because it has a lot of calories and contains calcium and protien, but sometimes we use peanut butter), a grain (usually a cereal or rice), a veggie, and a fruit during the day. We've been blending that and giving her 3 meals of 4 oz by syringe in the tube during the day (typically 9 am, 1pm, and 5pm or thereabout). Her overnight feeding starts around 9pm and ends around 5am. We were counting calories for quite some time, but Dr. Escobar told me to stop being OCD mom! :) I decided he was probably right and now we just go with the flow a bit more. I was so used to writing everything down because Riley had me scared to death of everything. I mean, she's a toddler now, I shouldn't have to keep track of every little morsel. The problem is... we haven't seen much of a change in the vomitting.

I'm getting worried because it makes life so ABNORMAL for her. It takes over an hour for every feeding, then we try to keep her calm for another hour. It's hard to keep a toddler still for that long. It's hard to go anywhere... cleaning up vomit from your car everytime you want to go shopping or to the zoo or library is no fun. We rarely go out to eat or do normal family activities for fear of her vomitting in public! I mean, it's gross for me and I'm the mom, I can only imagine what others might feel or how they might react. And daycare? Forget about it. My mother in law watched her in my home for the first 2 years. Now, I'm unemployed so I'm able to stay home with her, but we can't afford for me to do this forever. I worry about school. I know I have a few years, but I'd love to get her involved with playdates and more structured social activities... it's just not feasible to expect a preschool or daycare or other type of group to feed her through a tube and clean up her vomit. I mean, tomorrow we are planning on attempting our first public pool visit... I'm sick just thinking about how terrible it would be for her to vomit in the pool! I wish I could figure out what causes it because I just want her to have a more normal life. All other areas of her life are "normal" so it's hard to keep her from doing things because of this.

Oh, gosh... now I'm crying my eyes out. You know, we can deal with the tube feedings... I mean, if we have to do that forever, it's not so bad. Sure, I'd love to be able to send her to 1st grade with a lunch box, but if I can't, I'll get over it. What I won't be able to handle is sending her with a bucket so she can throw up in it! It seems trivial to most, but it's so hard to understand why we can't get anyone to help us figure it out. There's got to be a reason, something that's causing this. I'm so tired of hearing that she'll grow out of it. First they said she'd grow out of it by 6 mo, then 12 mo, then 18 mo, or surely by 2. But here she is 27 months old and we are still dealing with it.

Then we try to deal with her not chewing and swallowing... She'll put just about any type of food in her mouth and move it around, but she won't chew it up and swallow. Last week, we made slight progress with swallowing... she put small bits of deli turkey and or watermelon in her mouth and then took a big swig of water to make it go down, like she was swallowing a pill... but she never did chew it. We work at this mulitple times a day, have family meals, we've tried letting her eat while watching a movie or while playing... you name it, we've probably tried it.

Ok, now that I've rambled forever, I guess I need some support or advice on how to move forward in seeking medical help. Have any of you ever dealt with this or know someone who has? Is there a way for me to research these symptoms to see if there is some rare disease or issue we are dealing with? Any help is appreciated

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