My son will be 1 at Christmas. We have spent the last year living in ***l. His ex PCP continued to tell us for the 1st six months of his life that he had a virus at each visit to his office. We had started breast feeding at birth which he weighed 6#9oz by the time we had left the hospital he was at 6# with jaundice. His 5th day of life we were at the PCP his tear duct was infected. At 2 weeks he looked pitiful, looked like he had anexoria. He was still at 6# so I had to start supplementing. When we started with the bottle he would get choked, gag, and then throw up. With all the hassle of bottles, breast, and returning to work we finally went to bottles only at 2 months. At 3 months of age we were at the ER with breathing problems. His lungs were inflamed we then went to 4-6 breathing TX a day. I requested a swallow study to be done. At 3 ½ months the swallow study revealed he had chronic aspiration and severe reflux. The PCP then put us on prevacid and thickened his formula (alimentum). Everything seemed to get a little better until we got to 5 months with the exception of a couple visits to the ER with really high temps. Each visit his wbc would be elevated but no signs of infection. So we would get a couple of shots of rocefin. At 6 months I requested to see a pediatric GI since he seemed to cough more, get choked more and throw up more. After seeing the GI and changing everything for 1 week he had gotten drastically worse and lost close to a pound. The GI put us in the hospital for a scope at which time he put a NJ tube in place. His esophageal sphincter was not closing thus making the reflux worse. Also he had a hital hernia. The GI also requested additional test which showed he has a milk/ soy protein allergy, along with a latex allergy. Which I had suspected and had previously informed the PCP of the latex and they had agreed. We were immediately put on Neonate. 3 days later we had a fundoplication, hernia repair, and a G tube inserted. For about 2 months we were somewhat better then we started having problems with the balloon slipping us then under went another surgery to change to a JG button. We had another swallow study that shows his aspiration hadn’t improved. The next month we started with ear infections. We were on antibiotics for 10 days then 3 days later the ear infections were back we underwent another round of antibiotics and within 3-5 days after finishing them we were back at the dr office with still double ear infections we then did 3 days of rocefin and he still had fluid in his ears so we were scheduled to have tubes put in. We had to stay on antibiotics until the surgery was actually scheduled 2 weeks later at that time one ear still had a lot of puss.2 weeks after the tubes being put in he had a bought with clostridium and yet still another round of antibiotics. After this we were at the PCP to get his granulation cauterized and he was better , and I asked for some labs to be done. His wbc was 16000 3 days later with a 103.8 rectal temp it had risen to 19000 with no visible signs of infection. His IGA was 2.1 but the lab lost the other immuglobins. We had another shot of rocefin when he continued to have that high of a temp for 3 days straight. We can not use Motrin due to his funoplication and feeding tube. Last week at the GI he still is not gaining any weight we have already increased his formula by 50 ml daily last month. We are stuck at 4 oz bolus 5x day then we go on the feeding pump for 8 hours since he can not have anything by mouth. Now here we are today 4 breathing TX a day with him coughing, congested, and not feeling good with bronchitious. We have so many allergies milk /soy protein, latex, bananas, and betadine that we know of. Can most of this be due to autoimmune? I so desperately need to know for sure what is wrong with my son. WHY IS HE ALWAYS SICK!! I don’t know what else to do. I am willing to do anything at this point to make him better.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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