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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.Topic: At a loss!
I’m hoping there is someone out there who has had a similar experience because my husband and I are at a loss when it comes to our DD!
She is 17 montgs and had pretty bad reflux as an infant, as well as a milk protein allergy. She took Zantac first and then Prilosec until 9 months, and by 12 months was off meds and drinking cow’s milk without problems. Around 13 months she started spitting up/vommitinf every day. Since then, we’ve had food allergy tests, Celiac tests, experimented with eliminating lactose, thyroid tests, CF test (she had also plummeted from the 49th petcentile to the 2nd, though she us starting to gain more quickly.) At her last GI appt, the doctor put her on Prilosec and said to cut out yogurt (which always, even when dairy free, makes her vomit). In the last month she’s been less consistent with spitting up, but we’re still hearing “juicy” burps and today a true vomit (2 weeks in to prilosec).
Any thoughts??