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DylansMom

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  1. I am sorry to hear about your little guy. My son Dylan is 4 1/2 also and was dx this past August. I do not know anything about NAET, but I do know that my gastroenderologist said that this is the worst case he has seen, (not that I hold alot of faith in that. Maybe he has 2 cases... :P I think he has more than that,...) Anyway, he told me that for the next 3-6 months Dylan needs to be lactose free as well as friut juice due to sulcrose intolerant. He too stated this may heal and not be an issue once the villi heal and it could just be temporary.

    All this to say, I am right there with you having a 4 1/2 year old. He has been gluten free now since October as we had a set back in September and one in October due to cross contamination. It was tough in the beginning but we seem to have a better grasp. Hang in there. Feel free to PM if you want to vent or have questions. I may not have answers but I am willing to listen (well read anyway :) )

  2. My little guy, Dylan has had a set back about 2 weeks ago and seems to be struggling more this time. Since then he has been complaining of headaches. Since he is 4, I am not too sure if I should be alarmed or is this common with Celiac's. He has been to his doctor for flu shot and they checked his ears and nothing, so it's not ear related. I just wondered if maybe it is due to the lack of nutrients and such. Any one have these and maybe shed some light...or do I get it looked into more? 4 year olds shouldn't have headaches much, right?

    Thanks

  3. Okay, we saw the Dr to go over the biopsy results and again he emphasized how bad Dylan's Celiac is. Ulcers, no villi, no mucus, something else but I can't remember what it was now, but also because of all the damage the Dr wants him off all dairy and occasionally using Lactate (or whatever they are called) tablets if I allow him to eat dairy, like ice cream or something. Okay, so now where do I go (if possible) for things like margarine (for muffin mixes) or cheese. Basically the poor kid is safe only with chicken. I am really feeling the frustration with this situation. Even the other night I made him 'special' pizza and the pepperoni bothered him because if the acid it produced and he felt it 'burning' in his tummy.

    Any suggestions?

  4. thanks for the ideas. I thought heating pad too, but he wants nothing off it. Unfortunately it is midnight and we have been up for 2 hours with vomiting, abdominal pain and now liquid bowels which he can't control. As a tantrum (from me) my husband, who is their step-father is lying in bed totally disassociating himself to the situation. How can a grown person be so self absorbed and heartless. He has no compassion for Dylan. (Well really anyone) :angry: GRR/

    Well that is my rant

    Dylan is hurting more again

    thanks

  5. Dylan has been gluten-free for about 3 weeks I guess now and sure enough he is acting like he got gluten. I am just unsure where. I am retracing my steps and have a call into his preschool. I am betting it was cross contamination, not something he actually ate.

    My question is because he is only 4 and does not understand (and I even feel guilty cuz I am NOT a celiac) does anyone have any handy 'tricks' to ease the pain and discomfort. Thankfully he is sleeping now but I can tell it will be a long night. Any ideas would be appreciated.

    Poor guy...and all of you who have this. As I said I don't and feel the pains and discomforts of it and it in NO WAY compares to what you all deal with.

  6. For myself (although it is my son who had the disease) I have learned to rely more on the Lord and trust Him. He knew all this long before the doctors found it and ultimatlly He knew Dylan would be able to handle this. As well as me as his Mom and reading all the lables and learning. There are so many things I am discovering also with what we put in our bodies and my oldest son, who is not celiac disease (I haven't had him tested but he has always been in the 95% to 103% in height and weight for his age, so not concern there, he is my healyth ox. Hardly ever sick, and then Dylan with this and asthma...anyway) there are things just with gluten in general that have been linked to hyperactivity and other issues he struggles with, so I think he will be slowly becoming gluten-free too.

    That's my 2 cents...you may want your change :)

  7.   hilaryw said:
    We are newly diagnosed too, just started diet; we just had an endoscopy; why did your doctor do a colonoscopy too?  Am worried we have wrong diagnosis even with blood test and biopsy showing blunted (but not flat) villi.  Thanks.  Allie is 4.

    <{POST_SNAPBACK}>

    In my son Dylan's case he had the colonoscopy ONLY because blood was found in his stool. We went ahead and had it done at the same time for 2 reasons...A) I have thought there was something "off" in Dylan for years...he had an enormous belly. Basically he looked liked an Ethiopian child who was malnourished, but the Dr's kept telling me "No no he is just small it has to 'go' somewhere' , so I figured the more we find out the better and B) because if Dylan had to go to the hospital for this and then later have to go again he would be even more worried because he would have some idea of what to expect. This way we got it all done at one time and hoped it would be the better idea. Thankfully the colonoscopy was clear and fine.

    The colonoscopy was not directly related to Celiac.

  8. This is new to us too, but Dlyan just had his endoscopy and colonoscopy Friday and the Dr found extensive damage in his small intestines (found ulcers) as well as micro-bacterial damage to his liver but ALL is REVERSABLE. It may take upwards of a year on a gluten-free diet, but he WILL heal. So hang in there, it is foreign to us too, but there is so much info out there that I have found in just 2 weeks and these boards have been SO helpful.

  9. My Aunt told me about milk thistle and the effects of healing per say of the liver. Dylan does have liver as well as intestinal ulcers. (He had his colonoscopy and endoscopy Friday. Waiting for the biopsy result, but this is what we found out so far) Anyway, has anyone heard of or used milk thistle and do you think it helps.

    Thanks for any info :D

  10. I am so sorry :( that you too are having to deal with this. My son, Dylan who is 4 has just been diagnosed with this and we saw a specialist Monday. He goes in for the biopsy this Friday and due to blood in his stool, we are having a colon oscopy as well. Our GI specialist said his is the worst case he has seen. Not something you really want to hear, but it is what it is. From what I have been told, the endoscopy will be easy, except the child will get a shot as the put them under, but after waking up, if no reaction to anesthesia, the child doesn't know what happened and may have a scratchy throat. That is all.

    I know it is a scary time, but I for 1 and so thankful for these message boards and all the people who have been diagnosed so we can all be better educated about it and get the food industry to be forthcoming with ingredients and clearer labels.

    Dylan has been gluten free now for about 5 days and what an improvement in his desended tummy as well as his energy and color. We have been blessed and have a knowledgeable GI specialist and I think that is the biggest key is to find one who really knows about Celiac and is familiar with it.

  11. As I am still in the first week of my son’s diagnosis, I am confused about meds. I have downloaded a list of meds that are okay but for example Flinstone's vitamins are NOT on the list but I can't see anything that would be the problem. There are these mono dextins and what not...is that the problem? Any one out there more experienced who can tell me the funky chemical names I have to be aware of as well?

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