Posted By Posting
Jun 22, 2011
tigger2317
New here, need some help with DD's symptoms
Okay so my daugther is 6 months old and has had problems since birth. I have been fighting and fighting for answers and I feel like I get nowhere and just dont know what to do anymore :( Here is her history to help: 12-16-10 born induced but vaginally no problems at birth or hospital 4 days 1st Dr. appt, diagnosed with possible milk protein allergies due to severe projectile vomits, put on Alimentum and Zantac 1ml/day 1-2 weeks Bad reactions to Zantac switched to Prevacid 15mg solutab 1 month Had a cardiologist appt. due to murmur which appeared normal 1-2.5 mth life seemed good on Alimentum and Prevacid 2.5-3 mth had a cold that lasted forever 3 mth had RSV and an ear infection immediately after cold. Got antibiotics and breathing treatments 3.5 mth she suddenly seemed very cranky again, stopped sleeping through night, eating changed. She vomited oxidized blood and had it in one poopy diaper 3.75 mth saw GI for 1st time after vomiting the blood. Determined to be very intolerant and switched to Elecare due to fussiness, eating refusal and mucousy stools. 4 mth still not doing better, maybe worse so put on Zantac again with prevacid and rice cereal in bottle. Reacted bad projectile vomited so we stopped the Zantac and rice. 4.25 mth blood tests came back good and showed no allergies. vomiting slowed and almost gone 4.5 mth went to ER because we were tired of getting nowhere and she had streaks of blood in poo and her eating refusal was getting bad, dr didn't listen and insisted it was a bacterial infection which the tests showed it was not. 4.75 mth saw new GI dr., went back on Zantac and rice. Did not have pyloric stenosis. Now on 1ml zantac morning, 15mg prevacid afternoon, 1 ml zantac night, mylanta when needed and rice in bottles. 5 mth modified barium swallow showed she was not a risk for aspiration but didn't coordiante sucking & swallow well. Mucous seems to have stopped but now only poops once every 72 hours or so. 5.5 mth feeding aversions hit an all time high. Very fussy and screaming fits for hours when hungry. Sick of no answers! 5.75-6 mth go to new ER since she is sleeping way more and only eating 17-20 oz/day where they say she is not dehydrated and want to send us home. I stand firm that she has a problem and I dont want to go home so they admit us and for the first time all these professionals see what I see at home. They agree there is something wrong. She is tested and everything comes back normal. She ends up on NG tube with continuous night feeds for 10 oz and the rest orally throughout the day. They send us home telling us they dont know what is wrong but one day she may "declare" herself with new syptoms!! She had another modified barium swallow, upper GI, MRI (to rule out brain tumor) and a scope with biopsies showing she did not have reflux, ee, allergies, or a few other things. She has also had an abdominal xray. There is more detail I could go into but for the sake of not writing a book I will stop there :) I just dont know what to do, this morning is our first morning home and her diaper was so filled with mucous I thought it was diaherra at first. Of course she had nothing like that at the hospital for them to see and take serious. They were mostly concerned with her eating which in their opinion they fixed and the throwing up which has pretty much stopped. I dont think it is normal to have so much mucous for no reason and on Alimentum and Elecare. Her refusal is horrible she even puzzled the Speech Pathologist with how bad it was and not having any real medical reason why it would be so bad. We have also realised recently that she prefers to be fed when laying in her swing/carseat/boppy etc., in other words not while being held :( I feel like her body is trying to tell us something here with the extreme irritability and mucous and streaks of blood and other stuff you know? Anyone have any ideas or does this sound familiar? I have been told that reflux does not cause mucus so I am trying to find what does and just having no luck. I am just so darn frustrated...
Jun 22, 2011
tigger2317
Sorry it is so long and hard to read. I didn't know I had to put the breaks in on my own.
Jun 23, 2011
dcd
I am sorry to hear about your struggles. I know how hard it is.

PREVACID SOLUTABS CONTAIN DAIRY. I'm very frustrated that no one has shared this with you yet. If her milk protein intolerance is particularly severe (and it seems to be, since she needs Elecare), she could be reacting to the trace amounts of milk in the med. (My daughter has outgrown much of the severity of her MPI, but when she was your daughter's age, she reacted to trace amounts of milk - one time I accidentally gave her one of those teething tablets without reading the ingredient list and she threw up 6 times afterward...and that tablet was the size of a birth control pill, and the LAST ingredient was dairy.)

My daughter drinks Neocate and we compound her PPI ourselves using the Prevacid capsules and Buffer Babies. Find out more at Marci-kids.com and refluxsolutions.com. Her pediatrician and pedi GI are both on board with this.

If you don't want to use Buffer Babies, you can get a compounding pharmacy to make the liquid Prevacid for you (but know that the med is only stable for 2 weeks using this method). Or you can buy the Prevacid capsules, cut them open, and empty the beads onto a spoonful of cereal and give it to her that way.

Remember, UNLESS you are using a compounded version, PPIs need to be given on an empty stomach, 1 hour before a meal. You also cannot give the PPI and the H2 Blocker (Zantac) within several hours of each other or they will cancel each other out. Again, I encourage you to read through all of the info on marci-kids.com.

Though the scope/biopses confirmed no reflux, that might just mean that there is NO DAMAGE from the reflux in her esophagus, because the acid in the reflux has been controlled with the Prevacid. She could very well be experiencing discomfort from the the dairy in her Prevacid, which would not be evident from these tests.

I would make sure to eliminate absolutely all dairy from her diet. Double check the ingredients in every single medicine you give her. Call the manufacturers if you have to. What brand of rice cereal are you using? Many are notorious for being cross-contaminated with dairy. We use Happy Baby brand. Definitely ditch the solutabs and switch to Prevacid capsules if you haven't already.

I also know that for some babies, Neocate works better than Elecare, and vice versa (for whatever reason). Same thing with PPIs - some babies respond better to one than another. Something to keep in mind.

You're doing a great job. You are her mother and you KNOW if something is not right. Keep pushing, keep researching, keep asking questions. Best of luck to you.

p.s. To make paragraph breaks, type: < p > (but all together, no spaces).

Jun 23, 2011
dcd
*I know others will jump in here too. I contributed the things I learned from our experience. Again, good luck!
Jun 24, 2011
shasmom
Misdiagnosis?
New to this forum also. Have the doctors done an endoscopy or colonoscopy? It sounds almost as if it could be ulcerative colitis. It can be very painful and the symptoms you've described are very similar to colitis symptoms (mucus and bloody stools, loss of appetite, stunted growth). A pediatric gastroenterologist would be able to assist you with that. I can't imagine what you've gone through. I would really insist on getting answers. With my first daughter, she most definitely had reflux, but the doctors told me she didn't after doing an upper GI. We had her readmitted to the hospital. She went home on a monitor claiming apnea was to blame and that her gagging/choking was entirely normal. She too was switched to Alimentium which only marginally helped with the projectile vomiting. I was very traumatized by the whole experience, as I can imagine you are as well. It's a shame your daughter is lactose intolerant as Enfamil AR has worked splendidly with my twins girls who also have reflux. I'm not sure where you are located, but I would recommend calling the nearest children's hospital to see if their specialists could review your daughter's medical history. You and your little one should not have to suffer. Best of luck to you.
Check with your
doctor first!