Please Help Bentley

Bentley was born a healthy baby in 2013. Everything seemed perfect and complete, with having three beautiful children and purchasing our first home. Three weeks had passed and Bentley developed a rash on his face. It was thought be just a typical newborn/infant rash, but we brought him to his pediatrician to have it looked at. We were told it was an infection and were prescribed medicine for him. The medicine did not work and actually left a chemical burn in his face after the first use. And the rash then traveled all over his body. We brought him back for an emergency appointment and we were told he was wrongly diagnosed and had a bad case of cradle cap and was given a new prescription. That didn't really seem to help his problem. So after months and many different lotions and creams nothing helped and he suffered with itchy, dry, cracking and bleeding skin. By the time he was 5 months we had visited the emergency room several different times for his face and eyes swelling. Each time we were told had had something different and were prescribed different medicines. Finally we were given a referral to a dermatologist and were told it was a simple case of eczema, we were then  prescribed high strength hydrocortisone cream. That worked, until the treatment round was done and it all came back. 

After several more trips to the emergency room again. He was then seven months old and, we were at this point frustrated, so we requested a referral to an allergy specialist to see if that was the problem, they refused and said it was a dermatology problem. Do we went to dermatology again... same answers. Finally he was brought back to his doctor again, after the same cycle of things were happening, and they gave us the referral to the allergy specialist. We found out he had several allergies. Our hope was restored. As a solely breastfed baby (since he refused to start on solids without an understanding of why), by recommendation of the allergy specialist, I cut all the foods containing those allergens out of my diet. Still we saw no difference in his skin or colic. A month later he started to get real cranky, and we just assumed it was his teeth so we let it go for a week and during this time he was refusing to nurse much. We decided to get him an appointment for a possible ear infection, since he was screaming every time he would lay down....

He did not see his regular pediatrician so when I brought him in she seemed really disturbed with the way he looked more than his possible ear infection. She looked at his ears and said he did not have an ear infection, but there was something more concerning going on...He had lost weight, she then wanted us go see several different specialists to try and figure out what was going on because he was losing weight and had not hit any of his milestone yet (he couldn't roll over, or sit up, and could barely hold his head up) so we agreed to make these appointments. As we were leaving his appointment the doctor rushed out and said she called the emergency room to let them know we would be in, he couldn't wait for appointments he needed to be seen right away. My heart sank. And we said ok. We brought him to the emergency room and the doctor did not seem concerned with him other than the fact that he might be slightly dehydrated from refusing to nurse. They checked his ears again and said he did have an ear infection, but he still needed to stay over night for all the testing she wanted done and to be on an IV to rehydrate him. The next day he was discharged, and back to his normal weight,  with a prescription for his ear. The next week his results from all his testing came back, finally we might have some answers we thought...well nothing showed up abnormal. After months and months of dealing with doctor after doctor, we decided to switch to a more natural route. His naturalist had some new ideas on how to treat him. We started to see a slight change in his skin and energy levels, he was finally trying to roll over instead if just lie there all the time. All was going in the right direction (or so we thought).

Bentley was not gaining weight or growing (still refusing to eat solids.) His cloth diapers that once fit snug were now falling off on the tightest setting. There was nothing but skin covering his tiny little bones.you could feel every one of his ribs, his skin hung off his arms like a shirt on a hanger, basically he looked like one of those babies from the third world countries you see on commercials. With complete ignorance we assumed it was just from not moving enough because his skin caused him so much pain and he didn't have a lot muscle from his lack of movement. (But I guess if you were seen by so many doctors and they kept telling you he was fine, you would have to find your own reasoning) He started to seem lethargic as well, and just not right. so we brought him to the emergency room for possible dehydration. They told us he was fine. With no comfort that everything was all right, we left the emergency room. At this point sleeping at night was impossible, with trying to think of what could be wrong and the fear of waking up to your child not be there when you woke up, took over. The stress really started to take it's toll. We shared his recent visit to the emergency room with his doctor, add she finally said enough is enough, you need to go to the children's hospital. She called and we were admitted the same night. Our stay there consisted of 3 weeks. Bentley was found to be the worst case of dehydration they had ever seen and were surprised he was even still alive. He stayed on the IV for the full 3 weeks to rehydrate him. He developed edema from it. His organs needed to be monitored daily. His poor little heel was pricked 3 times a day. He also had endoscopies done to see if something was wrong with his stomach, more allergy tests, and a feeding tube inserted.  The only valuable information we received was from the advanced allergy tests, telling us he was literally allergic to everything he was ever exposed to or would be exposed to, whether it be food or environmental.. it told us that his immune system did not function the way it should. The best part about this trip is they brought my precious baby back to life, the worst part was they didn't have any answers to fix the vague description of the problem.  Going down this, what seems to be, never ending road with Bentley, we have created a lot bills trying to get answers on how to make him better. We have been struggling to keep up with those bills and the typical costs of being a home owner with a family. We are asking for help in order to pay off our medical bills and to be able to get more help for Bentley and fix what is wrong so he can live a normal life. Please consider donating to our family and helping Bentley with the long journey that awaits him. Thank you for reading.