Returning reflux causing life threatening issues?

[Anonymous]

This is going to be long, so please bear with me.

Noah was diagnosed with reflux as an infant. He had silent reflux, with very little vomiting/spit up. He was put on Zantac, and when that didn’t help, was put on Prevacid. He was on both medications for awhile, and then we went with just the Prevacid. We attempted to take him off the medication at 6 months of age, but he still needed it. We successfully took him off the medication at 9 months of age.

All went relatively well until he was almost 18 months old. On September 29, 2012, he received vaccinations, including the first booster of the flu vaccine. About four hours later, he developed red, itchy ears and swelling and redness above his eyes. He also had hives on his stomach. We gave him Benadryl and the issues subsided.

Later that night, he developed a high fever (around 103*F). The next day, he developed swelling and redness at the injection sites, worse on the leg that had the flu vaccine.

He started refusing food and the high fever stayed for around 2-3 weeks. We were in and out of his pediatrician’s office several times during that period. He was on round the clock ibuprofen and tylenol to keep the fever down and to keep him comfortable.

The high fever went away but he continued to have occasional low fevers (in the 99*F range). He continued to be fussy about eating. Previously, his favorite was bananas, but suddenly he would have a bite or two and then be done, or refuse them altogether.

I lost my job on November 14 and he started staying home with me rather than with his babysitter and her girls. The eating issues continued, and he started to develop other symptoms such as occasional vomiting. Around the end of November/beginning of December, his complexion became very pale and he started getting a bit unsteady on his feet. He was very irritable, only getting happy after his ibuprofen. He was getting ibuprofen around 2-3 times daily. I did let his pediatrician know this.

He had a couple of other episodes where his eyes got puffy and itchy, but not red. He had allergy testing and that came back negative for everything they tested him for. I also noticed reflux like symptoms (late night crying, swallowing, general irritability) so he was put back on Prevacid.

He had blood testing and it came back extremely low on iron, protein, and albumin. We were referred to a hematologist. His hemoglobin was only 4.1 and he had developed a heart murmur. He was admitted to the hospital and given a blood transfusion this past Wednesday/Thursday. The transfusion was almost complete when he developed hives. They stopped the transfusion, administered Benadryl, and were able to complete the transfusion once the hives subsided.

He was tested for numerous things, including Celiac Disease (which I have). The bloodwork looked good, and his hemoglobin rose to 10.1. We were discharged and instructed to avoid all dairy, particularly cow’s milk. He had been getting too much milk (though not NEARLY as much as the hematologist said she usually sees them consume in cases like this).

The irritability and instability continued, and actually seemed quite a bit worse. He started having violent tantrums/meltdowns. He had a very, very hard time with all of the poking and prodding at the doctor/hospital, as he can’t even stand getting his temp taken under his arm. He hated getting his heart/lungs listened to, getting his blood pressure taken, and getting poked and examined.

After a horrible night with a 30 minute meltdown and a day of vomiting, we were admitted back to the hospital. He underwent x-rays of all his bones, a bone scan, and an abdominal ultrasound. All of these tests were negative, and the Celiac test was also negative. When we got back to his hospital room, he had a 45 minute meltdown.

His doctors (three peditricians and the pediatric hematologist) decided that he could be discharged because of the extreme trauma the hospital stay was causing him. We have a brain MRI scheduled for Monday, a consult with a pediatric GI specialist and the hematologist on Wednesday, and are also going to be seeing the speech therapists at a special food clinic regarding his texture aversion and eating issues.

The doctors believe he is having some severe reflux issues and possibly has behavioral issues and/or autism. They think the reflux issues may have caused the aversion to eating and that in turn caused the anemia.

He had a great night last night and drank a lot of Pedialyte (he will not accept any of the milk substitutes). He slept well, and rather than insisting on sleeping on top of me like he has been lately, he was content with sleeping nestled in my arm most of the night. He had a bit of a rough period between 3am and 5am, but after some Tylenol he settled in and slept until 9am.

He woke up in a fairly good mood and ate a whole waffle and some banana. He had his iron supplement and almost threw up.

I had to use the restroom so I gave him to his daddy and he had a meltdown, but recovered after I returned, though he continued to be very sad and withdrawn.

He had his Prevacid and after 30 minutes he ate and had Tylenol. After about 20-25 minutes he perked up and got down on the floor to play. That is where he has been since then, and he is stable on his feet and happier than I’ve seen him in weeks.

His doctor wants him to take Prevacid 2x daily to really get it built up in his system so it starts working. (The Prevacid had been started only one day prior to the first hospitalization, so he hasn’t had very many doses in yet).

I’m wondering if anyone has experienced/heard of anything like this. I’m curious about what your thoughts are regardin whether the reflux could have caused all this, and also regarding the possibility of autism. The doctors suspect autism because:

-He previously was completely fine eating and fed himself, particularly finger foods. Since he started getting sick, he refuses to feed himself at all.

-The irritability/meltdowns

-The extreme aversion to even the smallest of medical examinations

-The meltdowns (though they didn’t start occuring until after the first hospital stay, he’s always had a bit of an extreme temper)

-The texture aversion

-He has always been very sensitive about touch. He loves rubbing my skin and always has, particularly when he is sleepy. He recently developed a habit of running his thumbs along the corners of his mouth, particularly when he’s stressed or sleepy.

Thanks to anyone who managed to make it through my marathon post.

[Anonymous]

Oh my goodness!!!! You made me get goosebumps on my arms and tears in my eyes. 🙁 I am SO SO sorry that your little one is struggling SO very much! (((BIG HUGS)))

I have created a blog with my story of what we went through with our children’s reflux and I have a lot of tips, ideas, and links to other sites that have helpful info. PLEASE read this…. http://help4acidreflux.wordpress.com/digestive-problems-and-learning-disabilities/

[Anonymous]

what test did they do to test him for celiac? I also have 3 children with celiac disease, and my husband and i and 8 of my 9 children all carry one of the major celiac genes. I would assume that they did a total IgA serum and a TtG IgA—but children under 3 years old do not usually produce Ttg antibodies for some reason—so a TtG test would not be accurate at his age. Also, If they did not test his total Iga serum, he could be IgA deficient, which would make the test worthless. One of my children is IgA deficient.

I periodically have my self tested for celiac when i am having blood work done, since I know i carry the gene. I recently had to have allergy testing because I have developed eosinophilic esophagitis. i asked the allergist to run a celiac test. Interestingly enough, I still show negative for celiac—but i have developed antigliadin antibodies. 3 years ago my antibodies tested at 1–which means nothing. last week, my antibodies tested at 7, which is equivocol—meaning i may or may not be gluten intolerant—but I don’t have celiac.

Have they tested your son for eosinophilic esophagitis? I have severe reflux, also–so I kind of have a double whammy going on.

I have worked with autistic children, we also have a son that we thought might be autistic when he was little—he is not, but he is still sensitive to light and sound—but so am i. I am also very sensitive to how things feel. I also get hives easy, and often for no apparent reason. I have atopic dermatitis, which means that my skin does not function normally like other peoples’ skin does–it does not creat a protective barrier, so water will really dry my skin out if I do not get lotion on it immediately–even then, it will sometimes bother me for a while. What someone else would feel as just something rubbing them, would likely make me itch, and posibly cause a rash. This condition is related to eosinophilic esophatitis. I once got dermographia for no apparent reason–you could lightly scratch a word into my skin—and it would welt up and make raised, red letters and the word would be very easy to read. I also would get huge hives all over my body. Any little scratch against my skin would welt up. It lasted for about 6 weeks—and then just disappeared.

I don’t think the things you are describing about your son’s behavior are enough to make me think of autism. It can show up around 18 months old–but they usually stop talking and become withdrawn.

Your son sounds more like a child that is miserable with something and reacting in the only way he knows how.kevieb2013-01-15 14:22:08

[Anonymous]

Hugs to you! Please keep us posted. xo, Annette

[Anonymous]

Today Noah underwent an endoscopy and colonoscopy. The diagnosis is:

Grade 1 reflux esophagitis (one or more nonconfluent erythematous or exudative lesions). They did take a biopsy but we do not have the results yet. The GI doc showed us a picture and the lower esophageal sphincter is wide open. He upped the Prevacid dose to 30mg and also prescribed Prilosec 2mg/ml 20mg once daily.

The report also noted “Gastric Body – mild erythema” and nodular mucosa on the duodenal bulb (again, biopsies were taken and we’re waiting on results).

They did also take biopsies for Crones, Celiac, lactose intolerance, and likely a few things I’m forgetting.

They tested for the genetic markers and the antibodies for Celiac. The doc also looked at my records (with my permission) and it turns out my doc NEVER tested for antibodies so now I have to do a three month gluten inclusive diet to find out whether or not I actually have Celiac Disease.

The gread news is that Noah is doing fantastic. His hemoglobin is up to 11 and he is happy, energetic, and eating like a horse. 🙂

The symptoms suggesting possible autism have mostly disappeared so the doctors do not feel it is necessary to go forward with further testing. The only thing that remains is that he won’t feed himself, but we really feel that is more of a matter of “it’s easier/more fun for someone else to feed me,” since he will play with the food with a spoon and will actually pick up finger food and hand it to us to feed him.

He was understandably scared (and hungry/thirsty!) before and after the procedures today, but wasn’t hysterical, so that was definitely a good sign. As soon as we got home he was all ready to play and eat, so that’s also great.

Thanks for your input/concern. 🙂 I will update this thread when we get the biopsy results (likely next week sometime).

nikelodeon792013-01-18 23:23:26

[Anonymous]

Thanks for the update! Sounds like you are getting somewhere! I am glad that Noah is doing better!

[Anonymous]

HOW did they diagnose you with celiac if they didn’t test for antibodies?–and how long ago were you diagnosed?

I’m curious as to what kind of biopsies they took to look for lactose intolerance. sometimes a person with celiac disease will be lactose intolerant because of the damage from the celiac, once they are gluten free, and the damage has healed, the lactose intolerance will often go away—-I guess I am wondering what they would be looking for with a biopsy, since celiac damage can cause lactose intolerance—-did they say if a lactose intolerance without celiac will cause a different kind of damage in the small intestine?

glad to hear he is doing better.

[Anonymous]

They told me they tested forthe genetic marker and antibodies but apparently they only tested for the genetic marker. So, the GI doc’s recommendation was to eat gluten for three months and then have further testing (possibly a biopsy).

[Anonymous]

I’m not sure exactly what kind of biopsies they did.. the doctor just said that we should be able to tell from the tests whether dairy could be part of his issues. It sounded like he didn’t really believed the issues stemmed from any sort of dairy intolerance, but wanted to make sure before Noah was given the go ahead to have dairy again.

It seems most likely that all of these issues stemmed from a bad case of reflux. Due to the reflux, Noah didn’t want to eat, and the less he ate, the more anemic he became. The more anemic he became, the less hungry he was, so it was just one big vicious chain of events.

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