Lanigan's Story... Any Advice

[andersonfam06]

Alright, so Lanigan is 9 months old. He was born weighing 8lbs 10 oz, so started off on the "bigger" side... He was diagnosed with acid reflux at 2 weeks. He screamed non stop and was almost impossible to get to stay latched on. They put him on Zantac, then Prevacid, and finally Axid. The axid did improve things, but minimally. When he was about 4 months old he started throwing up. And I mean THROWING up. So hard it comes out of his nose. He throws up at least twice a day. He has yet to have a normal diaper. It is either way runny, or he is horribly constipated. I am so incredibly frustrated. He is only in the 3rd percentile for weight now. So he's been labled with failure to thrive, as our pediatrition generally lables any baby under the 5th percentile with FTT. (in the military, can't switch)... He just has gotten sicker and sicker. Since Saturday we have been in the hospital every day. He is so dehydrated, but they cannot get an IV in him. He won't quit throwing up, so much that there is blood in it. His poop also has blood in it now. I am starting to freak and this hospital is really making me angry. He had a barium test to check for a malrotation yesterday, but it came back okay. We have a referral to a pediatric GI doc, but I have no idea when it is(once again, lovely military insurance)... I just don't know what to do anymore. They also found what sounded like a heart murmur yesterday. She said she hears them all the time on babies and that they are usually innocent, but his didn't soudn innocent because of the way it sounded. But, she doesn't want to look into it further till he is better. But who knows when the heck that could be, he has been like this but progressively getting worse since 4 months... My mom and I both have gluten intollerances.

[AndreaB]

I don't know what to tell you. I would definately go gluten free with him. Have you been on a gluten free diet? If you want an official diagnosis by trying a biopsy then you can't go gluten free with him yet. I don't even know if they do biospies on infants. If you can afford the extra cost, enterolab does stool tests for gluten, as well as dairy, soy, eggs, and yeast. Click Open Original Shared Link to go to there website. If you choose them and don't need an official diagnosis from your doctor (and there are a lot of false negatives with children) then enterolab will give you the answers you are looking for. We had our family tested through them and found out 3 out of 4 of us are gluten intolerant. Many people here have had a positive change in there children after they went gluten free. TCA and Nini are two of them. TCA has a thread for new people and Nini has a newbie survival kit on her website.

[shayesmom]

Alright, so Lanigan is 9 months old. He was born weighing 8lbs 10 oz, so started off on the "bigger" side... He was diagnosed with acid reflux at 2 weeks. He screamed non stop and was almost impossible to get to stay latched on. They put him on Zantac, then Prevacid, and finally Axid. The axid did improve things, but minimally. When he was about 4 months old he started throwing up. And I mean THROWING up. So hard it comes out of his nose. He throws up at least twice a day. He has yet to have a normal diaper. It is either way runny, or he is horribly constipated. I am so incredibly frustrated. He is only in the 3rd percentile for weight now. So he's been labled with failure to thrive, as our pediatrition generally lables any baby under the 5th percentile with FTT. (in the military, can't switch)... He just has gotten sicker and sicker. Since Saturday we have been in the hospital every day. He is so dehydrated, but they cannot get an IV in him. He won't quit throwing up, so much that there is blood in it. His poop also has blood in it now. I am starting to freak and this hospital is really making me angry. He had a barium test to check for a malrotation yesterday, but it came back okay. We have a referral to a pediatric GI doc, but I have no idea when it is(once again, lovely military insurance)... I just don't know what to do anymore. They also found what sounded like a heart murmur yesterday. She said she hears them all the time on babies and that they are usually innocent, but his didn't soudn innocent because of the way it sounded. But, she doesn't want to look into it further till he is better. But who knows when the heck that could be, he has been like this but progressively getting worse since 4 months... My mom and I both have gluten intollerances.

I would definitely try the gluten-free diet before things get any worse. Especially in light of the fact that both you and your mother have gluten intolerance. Are you maintaining a gluten-free diet currently? Is he still being breastfed (it would seem difficult if he's in the hospital)? As a precaution, I'd also look at avoiding all the other major allergens as well to see if that would help.

I don't know if you've opted to vaccinate your son or not but I would definitely look into putting any vaccines off for a while. Most babies get their HepB vaccine within the first two days of birth and in some, there are side effects which are similar to what you are describing. HepB is one of the worst as far as triggering autoimmunity. Apart from that, it may also help to put off any live virus vaccines as well (DTaP as one example). I know that this suggestion will most likely be unpopular but it sounds as if you are dealing with issues that have no detectable point of origin and so perhaps it would work out for the best if things were at least put in a holding pattern for now until the problems are under control. What you are describing has the sound of many of the personal stories on the ThinkTwice web site. Some children have a very tough time dealing with certain vaccines and most doctors are not aware of the symptoms of an adverse reaction (that's really sad to say but unfortunately, true).

I truly hope that you get to the bottom of this issue with your ds. My heart just bleeds for you and your family. This has to be the hardest thing in the world to endure and it's times like these where you wonder just where all of the compassion went in the medical field. I hope your son gets better SOON. No family should have to be a part of this kind of downward spiral for this long. Try to take it one day at a time and keep your strength up. Don't be afraid to light a fire under someone's rear end in order to get things moving more quickly. Military insurance or not, there needs to be a line drawn when it comes to need and suffering. If the doctors cannot recognize that fact, then feel free to step in and take charge. You are your son's best advocate right now. You know him best and you have a right to decide how his health care is managed.

Good luck to you!

[Cheri A]

((hugs)) ~ I'm so sorry to read what you and your little guy are going through. Go with what your gut is telling you. I was wondering, too, if you were following the gluten free diet yourself and if you were nursing him. Sounds like it could be so many different things.

[TCA]

I really do know how you feel. My daughter was doing the same thing and I got no help from drs. I finally went on a gluten-free diet and took her off all formulas and the improvement was amazing. It turned out that Dairy was causing blood in her stools and gluten caused blood from the stomach for her. She had a fundoplication done, and it came undone within 6 weeks. If you can, try the diet first, then do surgery if still necessary if that becomes a recommendation. PUSH to see the GI immediately. I've had to be quite a biddy at times to get my daughter seen by the right people and it took me a while to learn that was ok. You are his advocate, as overwhelming as that might be. My daughter has heart issues and is scheduled for her second open heart surgery next week. I would also push to have a cardiologist look at him. My daughter has had unbelievable issues with all formulas, so me on a gluten-free diet and pumping for her is all that has worked well. She also has a feeding tube. Her history is long and complicated, but I've learned so much about how to parent a sick child. I'll be glad to help any way I can.

[chrissy]

yes, they do endoscopies on babies---my daughter had and endo with biopsies at 8 months old. she had really bad reflux and was failure to thrive, also. she had a fundoplication done right before she turned 10 months old. your son definitely needs to see a ped gi. ask to be put on a cancellation list----sometimes you can get in earlier than your scheduled appt. that way.

[andersonfam06]

we have an appointment monday with a ped GI doc... thank goodness... i could go on and on about how angry this base hospital has made me. grrrrrrrrrr.

[AndreaB]

That's great that they are getting you in for an appointment. Keep us posted and keep on them.

[TCA]

So glad you got in. Are you gluten-free yet? Just wanted to make sure you knew that if you want a definite test, you need to wait to go gluten-free until after the scope. I wouldn't blame you if you just wanted to go gluten-free immediately, though to get him well. You might even call the dr. office to see if they have any cancellations for tomorrow. good luck!

[andersonfam06]

I am not on a gluten free diet at this point. I slipped off the diet after I had been on in for quite some time, and haven't been on a gluten free diet for several years now. I am not even sure if a gluten free diet would make a difference as far as the immediate future and him getting "better". It's like his little body has hit a snapping point. He hasn't ate since Saturday, aside from a few peices of potato and pineapple I have gotten him to take. He won't even take formula. Only pedialyte. Whatever else he takes promptly returns to the surface...

[Guest Robbin]

Are you able to pump breast milk for him? Perhaps you can use a pump and start up again and as Tanya does, feed him breast milk with a bottle. I will certainly say a prayer for him. Please for your own sake as well as his, stick to gluten free foods. Gluten intolerance can cause many severe health problems if you are not gluten free. Take care and keep us posted.

[andersonfam06]

i have no milk supply anymore. is there a way to have a supply again from being dry?

[Guest Robbin]

Talk to a ob/gyn nurse who deals with nursing mothers or La Leche League-they can help you, I am sure. I hope this can be an option for you. I know it has been done.

[TCA]

From what I understand you can relactate using a pump. I got a script for Reglan when my milk supply dropped off. It helped tremendously. If you're able to do this, I would highly recommend it. My daughter just hasn't been able to tolerate much else. My son couldn't do formula either. He nursed until 20 mos. Not what I had planned, but it's the only way to keep them healthy.

Hugs - hope he feels better soon.

[betsy7]

I would really think about starting a gluten free diet immediately. It cannot hurt your son in any way. Have your GI do blood tests through Prometheus lab tomorrow at the appointment -- do both the celiac panel and the gene test. I'm sure that GI's do emergency endoscopies as well (normally it takes a few weeks to schedule -- at least in my area).

My son and husband have celiac, but it's much more mild in terms of stomach symptoms. My niece also has celiac and her story is much like your son's story -- although she was 2 1/2 when diagnosed. She had been very, very sick -- explosive diarrhea, stomach pain, throwing up all the time -- for many, many months. She has major skin problems -- eczema, hair loss, etc..) since birth. Her ped. knew nothing about celiac and had continually said that there was nothing wrong with her. She ended up in the hospital with severe dehydration. My sister requested a test for celiac after reading about it online (I believe) and her tests were completely positive -- they did do an endoscopy -- which was positive. But, she had to wait several weeks for that test before going gluten-free. Your son is so young and it's not worth the wait if they can't do it right away. The endoscopies often don't show much for babies anyway. After going gluten-free, my niece turned around completely -- gained weight, grew in height and was much happier.

You can always do a gluten challenge later on -- giving your son gluten for a few months and doing bloodwork/endoscopy. It's something that you do under the care of a GI.

Whatever you decide, good luck with everything.

[jenyanderson]

Hi and (((HUGS))) to you. I know some of what you're going through. We're in the military too for one thing and I agree with you.. the DRS bite the big one! My son was born 9lbs 3oz. He started spitting up formula right away. Not just a little, but a whole lot. They switched him to 3 different ones until they finally put him on rice milk. That helped until he was a year old. By that time, I found out that I had celiac and I started giving him some of the food that I would eat. (we weren't a dedicated house) He liked it and I noticed that he was gaining weight again and his appetite increased. He didn't have tummy aches and didn't throw up either. The thing with the military DRs is that you have to find one that is willing to do whatever they can to help. We've been to Ft. SIll and there's a really good one there, but here at Ft. Meade, I haven't found one yet. Where are you stationed? Also if you are on Prime, there is the option of getting on Standard and seeing an outside Dr.

[schuyler]

I hope everything's going well. I understand the military stuff. I'm currently taking care of my cousin's kids while she is in Iraq, and getting them to run tests is like pulling teeth (I want all 3 of them tested for celiac). I wanted to test them through enterolab, but the military will not accept any outside diagnosis like that . The dr even told me that he would not accept any diagnosis that he had not made himself, and so he will not switch the 2 year old to meds that don't contain gluten ( I had to take him to a non-military dr and pay cash so that he could get some different perscriptions). Of course, once his mom gets back, she'll go back to the a@# of a dr, and he'll put him back on the old meds . Of course this is one of the drs who told her it was normal to bleed from the 10th to the 14th week of her pergnancy with her now 2 yr old. Which was actually her body rejecting the baby, and he ended up being clinically dead at birth and only weighed 1 pound (he was born @ 26 weeks, but he's doing great now) . I HATE military drs!