Re: Questions about elemental
Our doc gave us a choice of remicade, iv steroids or elemetnal when the oral steroids and the other meds weren't enough. Our formula is paid by insurance and has been for 6 years, but we have had to fight wwith them about this. Thankfully our doc is a big wig here and has been very supportive of the treatment (at one point getting on the phone with the insurance doc letting him know how much he could expect to pay for the remicade or tpn if they didn't authorize this). For my older son, who has mostly colonic disease, and had a ton of bathroom visits, the liquid diet continued to reduce bathroom trips gradually down to one every other day. For my younger son who is Mr. once a day, the formula made him have 1-2 loose stools per day (go figure). No allergy tests ever showed my kids' disease -- IgA, IgG or atopy patch tests. An allergist in NY told us the only way to find these was one food at a time reintro, so that is what we crazies have done. Good news is, it has worked. Best, Ellen
|
Re: Questions about elemental
Stacy,Our experienc echos the others. My daughter has diarrhea as her primary symptom (besides slow growth). She does still have liquid stools on elemental. The difference for us has been that the urgency has gone away. We used to need to live near the bathroom (and thankfully she was little enough that I carried a toddler potty with me). Now I rarely worry about how far we are from a bathroom. The stools are the same but things are so greatly improved. I am not sure if you are in the same boat, but it may be the urgency that you are really "hoping" to get rid of more than the loose stools. On the Dr side, it is common that Drs don't want to go along with it. Often, I think they are certain that compliance will be a problem and/or see it as too restrictive. However, I think most have been willing to go along with a family's wish to give it a try, so don't give up. If your's doesn't come around plan on finding one who will. If you find yourself needing to locate another more willing GI, let us know whereabouts you are and we might be able to make some suggestions. We recently did some allergy testing (blood test) and nothing showed as an allergy. Our insurance does cover the elemental, though as you have undoubtedly found out many don't (or at least don't do so without a battle). I do think you will have your best shot at coverage if you go exclusive--can't recall if anyone has had any success with getting coverage for supplemental. I believe you can buy some without a script--and there is often cases available on Ebay if you want to try something. THat is how we got our first case or two while we waited for insurance to work its way through. You just need to be sure that the formula has been stored properly. Last thought--if you have a nutritionist/dietician at your GIs office, he/she likely has samples of the various formulas or can get them for you.
|
Re: Questions about elemental
Stacy,I can relate to almost everything Laura wrote.
I was the one who came to the doctor and said that I want my son to start exclusive elemental and even told him which formula to use. Fortunately, he agreed. GI or, in our case sometimes dietitian, prescribes the formula. Since, from the beginning, in my son's case it was a soul nutrition,we never had any problems with the insurance for all this time (over 22 month now). We have Humana HMO. Yes, when my son uses the formula exclusively he develops liquid stools, but just once a day. And when he starts eating, even one gluten-free waffle a day, his stool becoming formed (but he never had D. as a symptom of his Crohn's).
|
GLUTEN ALLERGY?
Stacy ~
Does your son have an allergy to Gluten?
And, if so, how did you find this out?
I'm wondering about that with my daugher.
Jen
(Alexis CD dx 7/2003, Peptinex 1.0, Nexium)
|
Re: GLUTEN ALLERGY?
I got a stool test to find out about gluten sensitivity. See http://www.enterolab.com/ (I have no financial connection to this website or lab, I'm simply a satisfied customer.) There is also a blood test that can look for anti-gliadin IgA and IgG antibodies. There also is a skin prick test or RAST blood test to look for actual IgE-mediated allergy to gluten grains (wheat, rye, barley).Good luck, -Razzle (Adult w/ ?CD, Gluten Sensitivity, etc.)
|
Re: Questions about elemental
Hi StacyThere are 2 ways to use elemental feeding. if you use it as the sole form of nutrition with no other food eaten at all (usually done for between 6 - 12 weeks)your son is very very likely to achieve clinical remission. Whilst on exclusive our experience is that he would have liquid stools but this has never caused my son a problem. Once he is in remission he can then restart food and if he so wishes continue to supplement with elemental formula to help maintain remission and also to boost calories etc - normal stools!!
It is great for growth and weight gain, in his first 6 week spell my son grew 1 1/2 inches. The main downside is that they can relapse when normal eating is resumed and to help this it is often recommended that they use an immuneo-suppressant such as Imuran to stop this. In the UK, Europe and Canada elemental feeding is the first treatment that would be offered to kids with CD. It is very successful and the only side effects are that it helps nutritional status and promotes growth.
I live in the UK so insurance is not an issue for us but I believe that in the US companies will cover it though you sometimes have to fight to get supplementing as well as exclusive covered.There are folk on the board though who have had those fights and will be able to let you have any info you need.
If you need any more info on using elemental then ask away. When on exclusive my son drinks through the day and then puts in an NG tube when he goes to bed for overnight feeds which he then removes in the morning. When supplementing he just does the overnight feeds 5/6 days a week. Hope this helps. Heather (son 17 fistulising CD, elemental and pentasa, re-section and strictoplasty July 06)
|
Re: Questions about elemental
Stacy,My four year old uses elemental. It was initially used to see if we could get some inflammation in his stomach under control but mostly used to help him gain weight because he simply does not eat enough calories. He would not drink enough so initially we used an NG tube and now a G-tube. It was prescribed by his doctor. I was the one to suggest it though. At first our doctor gave us a bunch of reasons why not to do it which i honestly don't even remember but when i told him i was committed to it he became excited and said it is as effective as steroids. We used exclusive elemental for over 3 months and then pulled the NG tube and let him eat on his own. Again he would not eat enough to grow and began losing weight even though scopes and labs were good. we found out he had silent reflux and he had surgery to repair that as well as a g-tube placed. Now he gets most of his calories via formula but is allowed to eat what he wants. He just doesnt want much. The formula we use is a prescription "medical food" that we are lucky enough to have our insurance cover. Lots of companies don't though. It is delivered to us once a month by a home health supply company. There may be some specialtiy pharmacies that carry it but I have never looked. It's much nicer/easier to have someone deliver all of those cases.
I can't help you on the loose stools part b/c my son has an ileostomy. His stools are all liquid.
Good luck.
Laura (max 4 IBD ileostomy, g-tube, fundo...prevacid, zyrtec, cortifoam enemas, fish oil)
|
|