Currently we give our little guy 4 medicines a day one twice daily, not including his Neocate. I thank modern medicine on a daily basis for it's advances. If it was not for the technology to create these and neocate I do not know what would be happening to my son right now. I do know that he would be spiraling down the scary path of malnutrition.
Loratidine
At first we started with no medicine then we realized that he probably has Enviormental allergies, although those cannot be tested until he has lived 3 springs. So we started with the Loratidine. It definetly helped him out and we could see a major difference in his health on days he takes his medicine and on days he didn't because of skin tests that were coming up. Unfortunately, as the weeks went on we also noticed that he was gagging everytime he took the medicine. Gagging is one of the many signs of Eosinophilic Esophagitis (EE). Therefore, we had to switch flavorings. We didn't know this at the time but eventually we learned that our little man can not handle flavorings.
Prevacid and Nexeum
The second medicine we added, which he no longer takes because of the flavoring was Prevacid. Prevacid was an protein pump inhibitor. It is used in cases to help stop severe reflux (GERD) and given to patients with EE in order to determine that they definetly have EE and not severe reflux. In addition many children with EE also have GERD. Again our little man had a few problems with this medicine. The first problem were the solutabs which contain lactose and gave my son allergic reactions. The second problem was the flavoring in the powder form that you mix with water. At first he took it but as the weeks progressed it began to tak 20 minutes to make sure he took all of his medicine. We had to physically hold him down and after a while he began to spit the medicine back out. He also began to throw up more and more (which is another sign of EE). Due to these complications with Prevacid we called our doctor and were switched to Nexeum. We have to crack it open everyday and it tastes horrible but our son loves it and takes it really well in 1 minute. He has also stopped throwing up since he was moved to the Nexeum. We realize that we the food trials begin he will probably begin throwing up if he fails a food but we are happy that this medicine has helped us reach baseline.
Flovent
About a month after being put on Neocate without any food our son stopped growing again and began to lose weight. We went to see the doctor and asked if we should talk about a feeding tube for our son. The last thing we wanted was to wait until it was an emergency.
The Doctor said however, that he felt that was jumping the gun and that we should first try steroids. My husband and I are not fans of steroids first off there are many long term consequences of them as well as the effects the have on personality. We truly believe that our son's personality is what is going to help him live with his allergies and EE and that by taking that away we take away his greatest strength.
Nevertheless, the doctor insisted that we have to understand that there are different levels of steroids and the one that our son would be taking would not have those long term consequences nore personality altering side effects. So we decided to go with the Flovent. Twice a day our son swallows two puffs from his inhaler.
The funniest part is he knows that it is his and in the morning and evening will go get it, open it up and say mine.
Mirlax
Mirlax is the last medicine that our son takes. We throw it into his last bottle of the night and he drinks it all up. Thank god for this little powder. Before he was on the Mirlax our son was still having pain episodes that would last up to 20 minutes and we couldn't calm him down. Nothing would sooth him. We spoke to our allergist about this and he thought that there was a possibility that something else was going but didn't know what. So we also spoke to our pediatrician, who hypothesized that it might be constipation and that we should try Mirlax. Sure enough the Neocate was causing our son to be so constipated that he was in a lot of pain. Now those episodes have stopped.
Chart
We actually keep a daily chart to make sure that he takes all of his meds. You can check it out by clicking here.