My family and I have been encouraging my sister Leah and brother-in-law Dan to start a Gofundme account for months now and after much hesitation and resistance they have finally agreed to allow my family, Elliot's godfather and myself to establish an account on their behalf. They have been very reluctant to accept any monetary donations as they know so many families are in need. But recent changes in Elliot's medical status prompted them to finally agree to our efforts. Funds raised will help to cover out of state medical treatments, medical expenses and every day expenses that a family of six incurs.
The lastest uplate as of Wednesday evening (11/23): My sister was informed that Elliot will be admitted to Cincinnati Children's Hospital on Monday to have a PICC line placement and begin TPN. The expected hospital stay is 7 to 10 days and they will be 5 hours from home. Since Elliot has no safe foods, had such a negative reaction to his feeding tube and is still only in the 2 percentile for his weight causing him to be classified "failure to thrive", the doctors, my sister and brother-in-law all agree that this is the best option for Elliot at this time.
The support that has been shown to my entire family has brought tears to my eyes countless times and has truly been nothing less than amazing. Thank you all for your continued support, thoughts, prayers, good vibes and well wishes for my nephew. We will be forever grateful.
If you have not done so already, I encourage you to share in Elliot's story. His journey was featured on Channel 4 news in Detroit. It helps to give a look into his daily life and the challenges he faces.
Click here to learn more about Elliot's journey
We have seen really good improvement over the past week and we are so hopeful that the TPN is getting us back on track. Elliot had weight gain in the hospital for the first time in a long time. He has so much more energy, is so much happier and so silly. It's pretty amazing to watch his little personality emerge. At the same time, it makes me so sad to know just how badly he was struggling. His dr made statements about Elliot's status this week that will stick with me forever. We do not know what the future holds in relation to Elliot eating, but for now we are hopeful that he is on a much healthier path. We want to thank everyone for your continued thoughts and prayers. Please keep them coming. We have a long road ahead, but it makes it easier knowing that Elliot's Army will walk it with us. Love to you all ❤️
Last night (Monday) he was started on a low caloric concentration of TPN. About 1/3 of what his daily calorie requirements. Elliot's physician said because he is so malnourished we must increase slowly or we can actually make it worse. His labs came back solid today so his evening they bump the caloric composition up to 2/3 of what it needs to be. They will repeat labs in the morning and adjust according.
At this time, his team believes Elliot has something "bigger" than FPIES or MCAS. They feel those are just a "symptom" of the real issue. Blood has been sent out to check for rare auto-immune disorders, including Ipex. Those results will not be back for a couple of weeks. His GI, Dr Mukkada said the "Pie in the sky scenario" would be that we leave Elliot on TPN for minimum of 2 months, allow his GI tract to heal, allow him to grow and hopefully begin to pass foods/formula at that point. Wouldn't that be AMAZING!
With that being said...TPN is something that we are so grateful to have at this point. Regardless of how long he will be required to stay on it. We saw a change in Elliot today. He was HAPPY! Goofy, funny, smiling, flirting, independent, energetic, HAPPY! We had seen changes in him over the past 1.5 months that were so difficult to watch. The affects of his illness was taking a toll on him. Today...on just 1/3 of the TPN that is recommended...we saw a CHANGE! A positive change. His physician said you know just how malnourished they are when even the smallest amount makes a difference. Although TPN is not ideal and it has its own risks, we are feeling so grateful that we saw a glimpse of the "old Elliot" today ❤️ Truly made my heart explode with happiness. And it validates that we made the best decision for him.
As everyone noticed, Elliot had his NJ tube pulled today (nasal feeding tube). YAYYY!!! He still has his G-tube in his stomach and we will leave that in place indefinitely. There is no plan to remove that at this time. The rest of today was filled with education on how to care for his PICC Line and TPN and about 7437930 walks around the hospital in his wagon. We even got to sneak outside for a couple of minutes since it was so unseasonably warm!
Thank you so much to everyone for all of your thoughts, prayers, well wishes and generosity. We appreciate you so very much. Please just know that I am so overwhelmed with the love and support you have shown us. ❤️
Leah (aka Elliot's mommy!)
Have you heard of EGID? This family has kids with it and they eat a special formula. http://insidecolumbia.net/2013/06/01/hungry-for-answers/
A lot of strength for Elliot! Hi, my name is Sergio Saavedra, and I am Carmen's father, a girl only 1 year 3 months, who has a severe food allergy, and has a nasogastric tube since 4 months because she does not want to eat. We have tried everything, but nothing works. Now my wife is with Carmen in Mexico doing NAET. We are trying to contact Maureen Sortino Storti and Alexandra Brooke Chappell, who wrote comments here. We want to ask you some questions about how they managed to get their children to get better, because our Carmen has not advanced with any formula or treatment. If anyone has any way to contact them, we will thank them very much. Again a lot of strength to Elliot, and greetings to all.
Hi Leah! So sorry you are going through this with your little one! I just want to share with you that what is happening to your son is a common symptom of toxic mold poisoning. It has happened to me and several people I know. I was able to start eating again when I got away from the mold toxins that I had been exposed to. You can find more info here: http://www.survivingmold.com/ And here: https://www.facebook.com/groups/moldavoiders/?fref=ts I wish you all the best and I hope things get better soon.
Sounds like it could be a eosinophilic disorder. Have you taken him to a really good immunologist? Most allergist immunologist wont be knowledgable enough to know about these complication immunological disorders.
Sounds just like my son, he's 13 moths old and can only have breastmilk at the moe. And chips and twiglets. That's all. He's got FPIES. And we've been told he will need tube feeding soon. I worry as hes been allergic to all prescfiptioj the formulas aswell. I'd love to find out more about mcas. I wonder if my boy has this too??
This is exactly what my daughter went through. She also has fpies. We were mentally and physically exhausted. Tried every formula out there, some of her triggers, dairy, chicken, rice, corn, and more. Vomiting 12 to 15 times a day. One day I decided to stop all formula and make my own, started a blended diet with only about 3 ingredients, she does have a gtube. Within 48 hours all vomiting stopped. But I feel you, good luck, and God bless
Please send the story and info to Dr. Afrin. He is one of the country's leaders in mast cell issues. Mast patients have a horrible time eating and some rely on tube feedings. He is at the Univ of Minnesota. This is a rare disease and many doctors and hospitals don't know much about it. He will consult with your local doctors. It might be worth a try since the little guy already has this diagnosis. Prayers and Hugs!
I'm a mom struggling with two kids that have many food and environmental allergies. What I can tell you is to search for alternative methods such as energy medicine and homeopathy. I have used NAET for them and it has helped them tolerate more foods( there in a much better place). I hope and pray for you to find the answer you are looking for. God bless you and your beautiful child!
Perhaps you could check out energy healing? Search on the internet for Dr. Bradley Nelson and The Body Code. I hope you find what you are looking for.
My son was diagnosed with an auto immune disease when he was two, he is allergic to whey and gliadin, every dye, preservative, and nitrate...the AIP diet has helped tremdously along with coconut oil and avacado oil...look up the Goldberg clinic in Atlanta... I'm most certain they can help you!!! Know there is another mom warrior out there, fighting just like you❤️
I urge you to reach out to the team at UNMC in Omaha - they specialize in pediatric intestinal issues. Which are rare. I know a young lady with a similar issue whose life was saved by this hospital.
Please try CBD oil. Get knowledgeable about it, and find someone to consult. It couldn't hurt The body's cannabinoid receptors might be triggered and help click on responses to tell the brain to accept some foods.
Elliot is such a brave little boy. It sounds like the root cause of his condition is related to his airway. The way we breathe and swallow significantly impacts overall health and our immune system. Children as young as newborn babies can develop incorrect breathing and swallowing habits that lead to "floppy" airways and a whole host of feeding and immune system issues. Fortunately, there are ways to correct this ! .. with myofunctional therapy. I think The Myobrace system could really help Elliot. I'm an Australian dentist and I've just attended a mind blowing course in the US with Dr Raphael in Clifton NJ. Perhaps you could get in touch with his office to see how they can help Elliot or refer him to a myobrace practitioner close to you. All the best ! I really hope Elliot gets on the right pathway to health soon
I am a Vet Tech who has seen amazing results in specialty cases from homeopathy and integrative medicine. Most specialist won't refer to anyone outside of the Western medical field. I highly recommend doing your own research and consulting with an alternative specialist! I will keep your sweet boy in my prayers.