First off, I know what some of you may be thinking. Why in the world would I get on facebook and ask for advice on my daughter from people I haven't seen in years etc. I do not automatically go and do exactly what people say to, I use my brain and decide for myself in the end but occasionally it is nice to get other peoples opinions that are outside of the situation or may have experienced something like this or know of someone that has. : ) Let's start wth her birth and the events that followed. A few days after she was born, she started projectile vomiting her milk. The diagnosis? Severe reflux. The worst that some of her doctors said that they have ever seen. NOTHING that we did seemed to help. We tried every medication known to man, PPIs/H2 blockers, reglan, zosyn etc. We kept her elevated after eating. When she had a feeding tube in her jejunum and an NG tube suctioning out her stomach, she would STILL reflux and wretch and gag. We went as far to have the Nissen Fundoplication (a surgery to reduce/stop reflux) in July '07. By the end of August '07 she was again throwing up. (surgery was supposed to last years....not days) After her heart surgeries she dumbfounded the docs with her reflux. How did we know it was reflux? Let's just say she had many tests done that proved it. On top of the fact that she had the classic signs, the certain head extension when sleeping, funny colored tongue, breath etc. Nothing we did helped. So, weighing in at 11 pounds, we brought her home from the hospital at 6 months of age. She continued to throw up multiple times a day, but she gained weight like a champ over the next 6 months. By the age of 1, she had tripled her birth weight just like any "normal" child should. The entire first year of her life I don't think that there was a day that went by that she didn't throw up multiple times with the exception of when she was on the ventilator and the month that the Nissen worked. Her doctors said (including GI) that she would grow out of it eventually and as long as she was gaining weight and not showing signs of aspiration we shouldn't worry. So, worry I did not. I became used to her patterns of throwing up and could always be found with at least 5-10 "throw up rags", several spare outfits for MJ, and extra shirts for myself. It did not bother me to be thrown up on, she hated doing it as much as I hated it for her. However, after she would throw up, she would feel so much better it seemed. 2 weeks before her first birthday, her throwing up changed. She went for days and didn't throw up one time! Heaven! I thought that she was finally outgrowing it just like the doctors said that she would. About a week before her birthday, she started a pattern that would repeat itself every 2-3 weeks like clockwork for almost a year. Day 1 she would throw up one time. My red flag that we were starting a long week. Days 2 and 3 she would throw up a couple of times and sleep more and more after each episode. Day 4 and part of 5 she would wake up throwing up bile and would just throw up pretty much non-stop 24 hours. It was those days that I had to stop giving her milk and just give her pedialyte for 48 hours to keep her hydrated. Day 6 she would either wake up and be back to normal or she would wake up from a nap and be normal. Once she stopped throwing up, she would drool more than any child I have EVER seen in my life. We are talking entire shirts being soaked. On top of the drooling, she would chew constantly on hard plastic things. Her diapers were well......let's just say they were like that of someone that had a stomach virus. Liquid/foul etc (sorry not trying to be gross!) We started to notice that these episodes correlated with the timing of the eruption of a new tooth. (her first tooth broke through on her 1st birthday....she had just changed the puke pattern and gotten over the 1st episode) Needless to say, she gained weight then she would lose it during her sickest days when I could only give pedialyte (only 100 calories in the entire bottle) It was usually like clockwork, every other Sunday she would get sick and she would miss therapy on Mondays every other week. Or every other Friday therapy. Sometimes, she would go 2 and 1/2-3 weeks between episodes other times she would go a week in between. During the off times, she would not puke one time or show any signs of reflux. (when she did throw up, you could hear her swallowing 100 times, her tummy rumble like she had gas and then out it would come) Of course I mentioned this to her doctors and they all said as long as she was gaining weight and developing it wasn't anything to worry about and that it was just MJ. I didn't worry. I just dealt with the fact that 2 weeks out of a month my baby would feel like crap and that was very hard. On days 5 and 6 she would do nothing but sleep. When I say that, I literally mean she slept 23 hours a day and wanted nothing but to be held constantly. Dr. Frizzell told me it was ok to stop going to a GI doctor. My reason for asking him this? I went to her with MJ for a checkup and she referred us to MJs surgeon to handle ANY issues with her g-tube and Dr. Frizzell was already adjusting her meds according to her weight gain. GI doc had no advice when I talked with her. So, I figured that was one less doctor on the case and that I wasn't going to waste my money or put MJ through seeing a doctor that wasn't doing anything. Once again, Dr. Frizzell said that this was fine with him. About a month before MJs second birthday, she changed her throwing up pattern again. She would throw up once a day for about a week, usually after the first feed of the morning and it would have tons of mucous/saliva whatever you want to call it in it. She would drool for a bit and that would be it, she would go back to normal. On day 3 she would throw up a little more but she would take a short nap and get up and play like normal. Days 4 and 5 she got back to normal. However, during the "off time", she would sometimes cough like she was going to puke and sometimes would. The past month, she has reverted back to the every 2 week thing where she throws up really really bad. She has 2 of her second year molars left to cut on the right side top and bottom. After those 2 teeth she will have all of her baby teeth. Today is a prime example. MJ has been sick since last Saturday. She threw up really bad yesterday and part of this morning. Around 1pm, she threw up all of the juice that I had given her (a special drink we order that is clear fluid with lots of calories) and she napped for 15 minutes. After that, she got up and started playing like normal and hasn't acted sick since then. I fed her and she didn't cry (she normally would scream if she saw me with the tube and syringe when she was sick) or get sick. It was as if someone flipped a switch. What told me she was back to normal was that she wanted a salty tortilla chip and she licked it. She is drooling and the main thing is that she is chewing on everything again and will for a a couple days. She will have about 7 days without throwing up and then we may start the process over. Over the past few months a couple of people have very innocently recommended that I take MJ back to the GI doctor to figure out what is going on with her. The latest person was her new therapist at her feeding group that she attends on Wednesday. (I am not mad at these people, just trying to figure out what I should do) Here is what I have thought over the past year and 2 months. I found it very odd that her throwing up patterns changed right around the time that she cut her first tooth. I did some investigating on my own, read some medical articles and talked to some parents online at a reflux website. Teething aggravated reflux. So, I figured that she threw up like that because of her reflux which was aggravated by her teething process. Pretty much every 2 weeks there for many months I would open her mouth and either see where she was cutting a tooth or actually see a tooth popping through. I didn't worry abouot it because like I said her doctors could never figure out her throwing up from day number 1 and she had had every GI test known to man. Now I am wondering if something is going on with her? One person has suggested that maybe she is allergic to something and it builds up in her system and her body's way of getting rid of it is throwing up. Others have said change her meds around. My family says leave her alone she has been through enough and she is growing and developing along her own growth curve. I always said that I would wait until all of her teeth were in and if it continued, my theory of it being related to teething would be shattered and I would take her to a new GI specialist. The reasons I think it is reflux? The amount of mucous she produces during the sick week, her tongue turns white and then green at the back of it, and her breath can get quite foul, she swallows constantly and tilts her head back after a feeding and will cry when she even sees me getting the juice/milk out. I also don't know if this is related to the DiGeorge Syndrome. So far, the only thing we have seen that she has of this syndrome is her heart defect and maybe some of her communication delays. Who knows though? Every child with DiGeorge is different and it seems that MJ will be one of the ones that would never know she had it if we hadn't tested for it. At this point, I am doubting my original decision. Part of me wants to take her in and then the other part says why waste the time, money, and stress on MJ when they are just going to want to repeat tests that have already been done before and hear the same word: reflux. When she feels good, she feels great! She acts and plays like a normal child and it makes me so happy and makes me long for a time when she will not have to throw up constantly. Today, I sprayed some resolve on my rug and was letting it soak. I went to the kitchen to get a scrubbie and i came back and saw MJ with a throw up rag (clean) rubbing the resolve in the carpet. Like I said, she hates throwing up as much as I hate cleaning it up. She just cries and screams and kicks when she does it. It breaks my heart to see her like this and stresses me out because I try to maintain her hydration and doing that 24 hours a day can be exhausting. She is SO worth it though. Anyways, I know that this is long and drawn out and I appreciate ya'll reading this. I am open to any ideas or suggestions or words of wisdom. I hope and pray when she cuts these other 2 teeth that it will be over. That would be SO nice! I dream of the day that she can run and play and not have to worry about getting sick. BTW-she does see an immunologist/allergy doc once a year and she has never said anything about allergy testing. MJ has never had dry red skin, breakouts, etc. Just an fyi.