So we got appointments in the Mayo Clinic, and made the three day drive up to Minnesota. We stopped in the twin cities to see friends and family and surprise my cousin for her wedding. After all I didn’t know how to thank her for setting all of this up for us.
We went to around three to five doctors a day for 10 days. Michael had his maximum amount of blood drawn for 6 of those days. Michael had urine testing, an MRI, a lumbar puncture and an endoscopy and colonoscopy. All to find out that he has FPIES, there was talk about Michael being worse off than children with FPIES, so we tested him for everything possible and thank the Lord he only has FPIES and not something worse.
Though the Neurologist is very concerned about his tip toeing and his mood due to his seizure from the new label Neocate production, he claims there’s not much to do unless Michael get’s worse at night. So we will be watching him for the next week and taking videos. We are also waiting on some more Mitochondrial testing to come back, so far it has all been negative. We were hoping to find something that we could treat.
For now we are to continue to trial new foods, to hopefully find enough safe foods by the time the formula runs out. The company is unwilling to fix the problem even though they admit that it does smell, taste, feel and mix different. They claim that there has been no change. When really we all know there has been. The important thing to keep in mind about the Neocate problem is that it’s not just children with FPIES reacting, there are children with GP, Allergy, MCAD, and many more things. We are not alone in this fight. Even though I hate people knowing who I am as I enjoy being a small town mother I had to step up and be these children’s voices, they need to be heard! LOUD AND CLEAR AND I CAN DO THAT!
Michael is so happy to be home, and sleep in his own bed and have all of his toys around the house. And though I am stressed because I don’t know what we are going to do, I know that God is watching out for us. I know that my son was born for a reason just like all of these other children to be somebody and let the world know something, I just don’t know what it is. Hopefully some type of a wake up call on all of the medications people take and the medications on top of those to help with side effects, and all of the things they put into our foods now days. No Michael doesn’t get GMO foods, but maybe decades of eating these worsening foods is what causes children like him. WAKE UP WORLD!
Also it has come to my attention that people think we are scamming, or that it’s not a rare disease. I would like you all to know that I am fighting for my sons life ant that if this were about money I would have started legal matters against the company, but instead I have just been crying for them and begging for them to fix it! FPIES is very rare, not as rare as five years ago but still very rare, and there are NO treatments except avoiding your trigger foods, well I haven’t even listed all of them but as you can see we have a lot.
And my son does drink from a bottle, but his teeth (thank you for your concern) are healthier than other 3 year olds because that’s all he gets is Neocate and Water, not junk food of acidic foods that could hurt his teeth. Also please if you would like you drink this from a cup and then from a bottle and see how the bottle masks its flavor. To add to that we like to see how much true intake Michael gets in a day as we try our best to keep his weight up because every time he reacts he looses 5 pounds like it’s nothing. And he uses a stage two dr. Browns nipple, he can’t even tolerate the larger ones. So please stop saying things like “those parents are lazy, and they don’t even make nipples large enough for a kid that size”. You have no idea how much I work at keeping my son healthy, I have not once slept through the night and my son is three and a half, I have not once had a night just to ourselves, we have not once gotten to go out to a restraint just to enjoy food, and we don’t go through drive through like you to eat in our car, as our cars are food free zones. My life is different because of Michael and his allergies, but I would not take one day of it back as he is my whole world and even when he is sicker than sick because we let him eat a food, puking on me having ten explosive diarrheas, screaming and crying for three days straight, I look at him and see this miracle that the Lord has given me. This child that has made me a better person, and has taught me not to judge. I wish for you all to spend one day with Michael and see how pure he is even if you are rude and mean to him, he still smiles at you.
To everyone who has supported us, I can not thank you enough I am sorry for my rant but these people need to know that I am in no way LAZY. You who have helped us have made our days easier, I wish there was better news I was telling you like we had that Ah, hah moment we were looking for, but we didn’t. Please continue to give advice, and continue to pray for Michael, and keep us in your thoughts. It makes me feel better knowing that people are thinking good things about us and not posting about my son drinking from a bottle, it’s like really? Who cares? His doctors don’t and we like him drinking it because if not he’s going to be tube fed and will have nothing by mouth, imagine what that can do to a child who is used to drinking his only source of nutrition, taking that away from him would be punishment.
Please continue to support us and know that I do appreciate all the nice things people have said, and all the advice even if it doesn’t work it shows you are trying to help, and I really appreciate that.
So THANK YOU FROM THE BOTTOM OF MY HEART!
so many things I wish to say back to rude comments but I just don’t have time to waste, so like your mommy always said, “If you don’t have anything nice to say, don’t say anything at all.”