I thought I might be able to contribute for the next person who is seeking help is this area. My story is long but has some useful information. It all started when my son turned 3 months old and started daycare – my mother watch him for the first three months. After three months we started having sleeping problems such as ALWAYS hungry. He would go maybe an hour eating 8oz and start screaming. If I feed him again he would be fine for about another hour. His pediatrician assumed it was a formula issue and said we could start him on cereal and see if that would help – it didn’t. We struggle for another three months constantly holding off feedings and listening to him cry for over 2 hours at a time in the middle of the night. At 6 months we thought he would get better when we started “real” food – not so much. He was a very good eater but would cry a lot when eating, however, he ALWAYS ate and just suffered through it. We saw several specialist, stomach doctor, asthma, ENT, and was even tested for things like Cystic Fibrosis. We did all the tests twice – swallow study, CT scan looking for blockage, and I finally stopped everything when one doctor wanted to scope him and take a biopsy of his lungs. We really where at our wits end but here we have a baby who couldn’t eat, was constantly sick with ear infections and sinuses infections. At one point he was prescribed over 22 medications in one year and half of those were antibiotics. We got the point were he was getting antibiotics injections because the regular ones weren’t working anymore. These were to treat bad ear and sinuses infections. Well about 9 doctors/specialists and two pediatricians later I had enough with everyone treating my son like a science experiments. The doctors would actually get excited about this kid because he was a great learning project for them. I have to add that we live in the Chicago area and he was seen by the best of the best at Children’s hospital and University of Chicago – they all couldn’t figure it out. We even saw a “doctor house” but that proved to be useless also. He said yep, he has reflux and shoved us out the door. Alright, I am not telling all of this to list out our sob story but more so you can see we tried everything.
Well here we are 3 years later and we FINALLY have some answers. I dropped ALL the doctors and stuck with the pediatrician and ENT – those were the two that didn’t want to run every test under the sun on him. Turns out my son has severe allergies and asthma. Now I remind you that I did see one the best allergist at University of Chicago and she did do a scratch test on him. After five little scratches on his arm she informed me that he did not have allergies. Well one year later right before he was schedule to have major sinus surgery (taking out a piece of his bone), my ENT discovered that she did not do the right allergy testing and had me do another one in his office where they inject him directly with all kind of different items – over 50 at that test. He came back positive for almost all of it. He is allergic to every tree but one and grasses, molds, bugs, basically the world. This may sound like bad news but I was so relieved to have an answer. So we changed our course and canceled all surgery’s and started treating the allergies. I have also been doing a lot of research on how modified all the formula’s are and I think that is another thing to consider. I have another child who is 6 and had some issues as a baby too which all corrected itself by the time she was 1 year but I really do think there is a connection between the “processed” baby formula and all the stomach issues kids have today. On a side note, my son also could not tolerate the nasty smelling special formula but again it is all processes. I wonder if the organic formulas would be better on the babies??? I did not even consider this at the time.
My take away from all of this is go with your gut! the medical field doesn’t always work in the best interest of the child and I can say for sure that we really tested them with not much luck. I am not saying you need to leave all your doctors but find the one that listens to you fully and works WITH you and doesn’t just push all the tests and drugs. I have heard way too many times, “let’s just try this medication and see if it works”. Looking back, that seems so crazy that I dumped all those drug into my kid who now cannot take amoxicillin or any other “starter” antibiotic. He has built up such an immunity against them. Oh and for those have the chronic sinusitis from reflux, ask your doctor about bactraban (SP?). We have had GREAT success with it. We mix it with saline and spray it up his nose – which keeps the drugs from traveling throughout his little body. Most Dr. and pharmacies are not really familiar with it though and I have a hard time getting it filled that way.
Ok – so I know I left out a lot of detail but I needed to get our story out for that next person. I remember sitting on this forum for hours searching for that one answer and if my story helps just one person then it was worth it. I know how helpless you feel because I was there, running around everywhere trying to find answer and sitting up all night crying with my son because I couldn’t help him. It is frustrating but we got through it!
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