This is the 2nd annual Feeding Tube Awareness Week (February 5 - 11, 2012). There are NG (Naso Gastric) tubes, NJ (Naso Jejunal), ND (Naso Duodenal), G (Gastric), GJ (Gastric Jejunal), J (Jejunal) and TPN (Total Parenteral Nutrition). No one wants them and no one wants their children to have them, but when they are necessary, they can be a Godsend! 
The feeding tubes, along with liquid medical "food", such as elemental formulas, can provide the proper nutrition when a child is allergic to many foods (typical allergy or eosinophilic disorder), can't swallow, has a gastrointestinal (GI) disorder, or isn't getting enough oral nutrition for various possible reasons. They can allow a person to receive the nutrition necessary for proper nourishment to gain weight, grow, and thrive, which they were otherwise unable to do on their own. There are many reasons why someone may need a feeding tube, but a person does not get one unless they REALLY need one. Please don't judge.
If you see someone with a feeding tube, please don't make a face, stare, or ask "What's WRONG with YOU?" They don't have "cooties". It is an alternative, yet necessary way for them to "eat". Please give that person (especially a child) a smile and know that whatever the reason, that feeding tube IS a medical necessity and it is providing medical benefit to them. If your own child knows someone with a feeding tube, please reiterate your lessons of tolerance and understanding, just as you would with all other differences. They likely feel left out enough as it is, and we can never have too many friends who care.You can learn more about feeding tubes at the following organizations' websites:
APFED (Americal Partnership For Eosinophilic Disorders)
Feeding Tube Awareness
The Oley Foundation
To learn more about our personal journey and how the use of feeding tubes have affected our lives and improved the health of both of my children, please feel free to read my prior blog posts, especially the first one "First Post - Our Journey".
Hi there! Just found your blog from someone who follows it. I am so happy to find this. I am saddended to read about your son and all he has gone through. My son was just diagnosed with eosinophilic gastroenteritis about two weeks ago. I am so overwhelmed with this diagnosis. I will give you a little of his background...
ReplyDeletestarted having bloody stools before the age of two, had a colonoscopy/endoscopy that came out clean, but he hemorrhaged from the biopsy and we were then diagnosed with a bleeding disorder.
around that time he was also diagnosed with an immune deficiency, called hypogammaglobinemia, and due to that gets infusions of IVIG every 3-4wks.
he has continued to have HORRIBLE belly pain since he was two, but multiple scopes, biopsies etc have always shown nothing!!! Until this most recent one.. the doctor said that there were greater than 40 eos on the high power screen which I guess is a lot. And that it was like that with each biopsy that he took, and that they were all actively breaking down:-( We have had completely normal RAST and skin prick testing....I am awaiting to hear about a different allergy test and when we go in for that...
We are being seen at Boston Children's and MassGeneral. But had contemplated contacting CHOP because of their center. Is this a good idea? Are the EOS disorders hard to treat? Do you have any thoughts/recommendations for us as we start this journey?
HI , I'M SO happy to have found your blog im a mother with a 12yr old son with eeg and eos he was diagnosed with the dual , i honestly feel he has had this since the day i brought him home from the hospital as a new born , deep down i always new some thing was wring deep down in my gut . he was diagnosed with asthma at 2yrs old i didn't that was a big deal because most of my family had it . he was always getting sick after he ate food i saw my son suffer silently and i already buried one child i shore would not allow another so i go on a hunt for gi doc he is 3yrs older then his sister she is taller then him and weighs the same at 12yrs old he is only 76 lbs finally i got a doc that would give him a biopsy , i thought he chron's disease because i have ankylosin spondylitis and i know there in the same family , when that doc told me they found what was wrong with my baby i was so releived to know what it was , so now things are difficult because my son is becoming a teen and doesnt like the meds ,he doesn't want to run to duke hospital every week . i thankyou for your website .sophie061616@yahoo.com sophilia ward muhammad
ReplyDeleteI'm sorry it took me so long to reply. I'm so sorry for your son's diagnosis, but am relieved that you actually have an answer as to what is going on with him. It's sad that it takes so long to get answers, yet good that there are now (finally) more doctors that recognize and can treat it. I hope your son's IVIG infusions are helping.
ReplyDeleteUnfortunately, the diagnosis in areas of the GI tract, other than the esophagus, is going to be more complicated than EoE (which my son has). It is less likely that it will respond solely to food elimination (elimination diets), although there is a chance and it's definitely worth trying. I have been advised that it is more likely to require medication to treat. From what I have seen over the years, it seems that it is more common for those with other EGIDs to be more medically complicated as well (additional diagnoses), although it can happen with EoE as well.
APFED has some really good newsletters with articles from Drs that are very helpful. If you are a member of APFED, you can read all of the old issues online. I recommend doing so, as you'll learn more about the differences in the diagnoses and treatments. Aside from that, their website is geared to educate patients, so I would start there and read what they have available.
I am no longer moderating the Eosinophilgastro Yahoo Group, and I know the owner hasn't had time to either, but it was a good place for online support and is where I got a lot of support years ago. Most people are now on Facebook more than anything, but it may still be a good place to pop in. I don't know who is checking membership requests, so it may take a while to be approved, but I'd try anyway. http://health.groups.yahoo.com/group/eosinophilgastro/
I know that Boston was the place to go when Dr Furuta was there. He has since moved to Denver. I'm assuming it's still a good hospital and that someone else there has experience with EGIDs, but I don't have any personal experience there, nor have I spoken with any of the Drs that treat there.
I definitely do recommend CHOP from personal experience and getting to know the Drs who treat EoE/EGID. They do specialize in EoE and there are fewer patients with other EGIDs (they are much more rare than EoE), but I do know that they have experience with the other EGIDs, such as Eosinophilic Gastroenteritis. I have also heard very good things about Cincinnati for the other EGIDs too and I know that Dr Putnam has a lot of experience treating all of them.
I do understand the bleeding issues, too. My daughter was diagnosed due to a hemorrhage after a tonsillectomy/adenoidectomy, and due to the similar issues with "friable mucosa" in the esophagi of both of my kids, my son was tested and was confirmed to have the same issue (a mild platelet function disorder). Thankfully, it is mild and really only an issue with procedures in the GI tract, etc (which, of course, my son needs).
As for other thoughts and recommendations, make sure you understand the difference between EoE & other EGIDs so you are aware of the specifics of your son's particular diagnosis and treatment. Again, APFED newsletters are a very good place to start.
Also, if you weren't already aware, there is a local support group in your area: http://www.egidboston.org/index.html
I hope this helps. Good luck. Feel free to contact me via the njpaeos.org website if you need any further support.