AnonymousInactive
Hi Brooke… I can’t begin to explain how similar this sounds to what Q and I just went through. After Q turned year and it became apparent that the reflux was a big issue all around, our doctor too ordered celiac’s testing, CF testing… which I too found it very scary that they even mentioned it being a possiblity, and an endoscopy and ph probe. The ph probe came back so severe that the doctor didn’t believe the numbers… and she was on meds during this… meds that they said I was “over medicating”… so due to her ph probe results, FTT and weight loss, they decided to admit her and we stayed in the hospital for a whole week! They did lots of testing and all the tests came back negative… except for the obvious. The doc said that she had severe GERD. The endoscopy showed damage to her esophagus… the doc was pushing for a fundo and jpeg… I told them to hold of on the jpeg and let’s just see if the high calorie formula works. He agreed… no fundo at that time… he felt that the damage wasn’t too severe… but her reflux is.
Anyways, I totally understand what you are going through and I kid you not, a couple months ago, i was there… It’s so weird… almost like a blast from the past. Hang in there. I do hope that you get some answers from the testing. Don’t forget to update us… I’m really curious to see what they come up with.
-Sarah
AnonymousInactive
Brooke,
Good luck with the tests. Sounds like you have a good plan. Christine (kevieb) is an amazing resource on her for celiac- a few of her kids have it.
Our ped also saw Hailey fighting feeds at the office, and it was what convinced him to refer us to a GI.
Keep us posted.
AnonymousInactive
Well…we had our GI appt yesterday and Corinne has not gained any weight since our last visit with them, therefore, they are finally going to do an endoscopy to rule-out any other underlying abnormalities. They also got a real clear picture of Corinne’s discomfort while we were in the office…more then ever before!! Corinne was arching and crying in pain the whole time! They got to witness her refusal of feeding regardless of her evident presence of hunger. It was heartbreaking for me and I think they saw that and so they were a little more “in tune” to my concerns then my previous experiences! We got the endo scheduled for this Friday b/c I was persitent with them in wanting to get “answers” Hopefully we will, we’ll see what pans out!
They also did some further blood work yesterday. They’re testing her for celiac disease. I found this interesting as this is usually an inherited disease in which the body cannot digest gluten (which is contiained in most wheat products). The GI spec stated, however, that celiac is being seen more and more in kids that don’t have any family history of the disease…I found this very interesting. The good news is that if this is the underlying problem, then I think we will be able to easily manage it with the proper learning tools, etc about the disease! They are also going to do a sweat test on Corinne after the endo to rule-out cystic fibrosis. This I was VERY suprised about and also very scared as to why they wanted to do this. Because of Corinne’s failure to thrive, digestion issues, and frequent upper repiratory congestion, they want to be sure that this isn’t the underlying issue. On one hand I’m scared, on the other I’m glad they’re covering all the bases to find answers! I had the quad screen that looked for CF while pregnant with Corinne and it was negative, so I don’t think this will be an issue, but still a bit frightening!! I also think that we will be doing the ph probe test after the endo to see if her reflux epidsodes are a contributing factor to her coughing, choking, gagging, night waking…which will be interesting to see!!
We changed her from Lactulose to Miralax, which I’ve heard works better anyway and is less gas forming. We did, however, keep her on her current Prilosec and erythro doses until after the endo. If it comes back normal I will be sure to address the dosing, etc. Corinne is actually on the right dose (7mg 2x/day and she’s 7.9kg) but marci-kids recommends 3x/day administering so I’ll mention that to the GI team and see what their thoughts are!
So that’s where we stand for now…I’ll keep you posted. Thanksa gain for all your thoughts!!
p.s. my apologies..i just realized i posted this under the HELP topic.. I’m not too savvy when it comes to the computer….
AnonymousInactive
WOW…3 months is young!
My dd is MFPI and cannot do any solids, we tried at 5 months and 6 and 7 and well then my ped GI told me to stop as it wasnt helping to keep trying…she gets mucousy, congested, has sleep apnea, her reflux is worse, her excema flares…not fun…so we are neocate only for a long time Im guessing…
that said….my ds reacted horridly to oatmeal back when we gave it to him…oatmeal can be allergenic, which is odd that the dr said it was best of the foods to intro…sweet potatoes or cooked pears are actually lower on the allergen scale than any cereal….when my dd can eat food we are skipping grains for awhile (we have history of celiac..no wheat/oats/barley/rye…)
I would hold off till at least 6 months for any food if not longer–especially if one is MFPI and not just MSPI (multiple food protein intolerance vs Milk SOy protein intolerance)
AnonymousInactive
Stats and Facts from http://www.enjoylifefoods.com/content/FAQs.asp
- Food allergies and intolerances are on the rise.
- Doctors are reporting an increase in food allergies in the USA.
- At least 30 million Americans (10%) suffer from some sort of food intolerance.
- 8 foods—cow’s milk, eggs, wheat, peanuts, tree nuts, soy, fish and shellfish—account for 90% of all food allergies.
- 1 in 133 Americans have celiac disease.
- Autism is known to affect as many as 1 in 150 Americans. Parents with autistic children are now experimenting with gluten- and casein-free diets as a means to manage the symptoms of this condition.
- Though scientific evidence is lacking, other health conditions (i.e. ADHD, fibromyalgia, rheumatoid arthritis, multiple sclerosis, candida) have also been suggested to benefit from specific food avoidance.
http://www.achooallergy.com/allergy-statistics.asp even more stats on the “allergy epidemic”
Heidi T.2007-3-9 0:53:10
AnonymousInactive
Christine
We are going to “one of the best hospitals in the country” that is what I have been told and the only thing they have tested him for is CF (thankfully it came back negative). This is our 3rd allergist, GI & ped. He was tested for Celiac when he was 10mths old it it too came back negative. The head allergist talked to us about it in Dec that he hadn’t ruled it out but then this guy had nothing to say. From what I have been told that they need to be on a diet prior to testing and he wasn’t at the time only Neocate.
Thanks for the suggestion on IBS…I’ll do some research on it.
AnonymousInactive
How sad for you and your little boy. I feel so bad for you.
I have heard of at least one or two babies on this board who were allergic to apples, so evidently it’s possible. How could this doctor believe that everything is a coincidence?
Did you happen to see the latest threads on allergies. I’ll see if I can find them for you. Maybe they will help some.
https://www.infantreflux.org/forum/forum_posts.asp?TID=7728
Has anyone ever considered that he may have IBS (Irritable Bowel Syndrome)? I talked to a mom a few months ago who’s infant had reflux and IBS. I didn’t know babies could have that but she said her little girl did. The consipation and diarrhea makes me think of that, although that can certainly be from MSPI as well.
Has he ever been tested for Celiac?
I’m sorry….I wish I could be more helpful. I hope some of the other moms here will have some better advice for you. I’ll say a prayer for Trevor.
AnonymousInactive
Ah, yes. the doc is checking for celiac’s and I should get the results soon. I don’t think they found anything though because they haven’t called me yet. But I meet with GI tomorrow to get her PH probe placed. There I will have an opportunity to speak with him about it. And about her recurrent fevers and sicknesses. Maybe I can get him to scope her esophagus too.
Yes, Quinn is sick again and has been since Friday. Her fever has been around 103 for five days, and shoots up to 104.3 at night. She is not feeling very well at all and I just don’t know what to do about all her sickies. Each time she gets sick, she just takes much longer to bounce back. She’s 13 months and still not walking… which is not too concerning right now. But I took her to the doc and Quinn has not moved on the scale nor has she grown in inches. She is still 18 pounds and 29 inches long. Ugh! The doc is a little concerned about her lack of growth. When Quinn gets sick, she does not eat. If she does not eat, she does not grow. The more she is sick, the more she does not eat. Do you get where I’m going? So we need to keep an eye on that. Also he wants me to keep a daily log of her temperatures and her symptoms along with them if she has any. It’s not uncommon for a kid to have a temp with a cold or virus, but it is uncommon for a kid to have a temp with no symptoms at all. The doc said that lack of sleep can cause a kid to be FTT and get sick often. So tomorrow is our sleep study. Hopefully we can get some answers with that.
Thank you for your wisdom! It’s greatly appreciated!
-Sarah
AnonymousInactive
Oops!
I missed the previous posts that already recommended checking for thrush and celiac! At least Im on the right track (looking into both for my son too).
Again, best of luck-
Jill
AnonymousInactive
Hey Laura and Sarah,
I was just browsing the topic and saw your posts. While I haven’t been through quite as hard of a time with my son who has severe reflux, (still working on his issues), I thought I’d share what a friend of mine just went through. Note-Im just a mom here, sharing what I’ve heard about this stuff-sorry if Im not 100% accurate, but it might give you a place to start!
Her son wasnt gaining any weight or height (at 3+ years, about 24lbs.)They had EVERY test done in the book, and finally were given a most likely diagnosis of Celiac disease, which has many of the same gastro-like sympotms of reflux, more importanty though, an inability to gain height or weight! (If youre not familiar with it, its an autoimmune disease (may explain the inability to get over Quinn’s illnesses) where the person actually has a prob. with gluten. Detectable through a blood test.
Then of course, the blood test came back negative for Celiac. After some more GI tests, They found out in the end, that he was allergic to his INHALER, and it gave him thrush and an infection in his esophasgus, and therefore he couldnt/wouldnt eat anything! He was put on a new medication, and it healed up very quickly!
Hope this helps!
Jill
Henry: 10/2/06-outgrew reflux by 6mo. &n bsp; &n bsp; &n bsp; Sully:9-1-06-severe reflux-just figuring it out! on lots of zantac for now-needs something stronger/possible food allergies
AnonymousInactive
sarah, i don’t know if this will make you feel any better, but sylvia was failure to thrive, also. she was below the 3rd %—-we felt like she was doing great when she got to be around the 17th%. i’m not sure if she is much above that now. i worry some about her also getting celiac disease like my other girls—-she has enamel hypoplasia and has just recently had some rashes show up that look alot like rashes that 2 of my celiac kids have had. so far, though, she has tested negative.
AnonymousInactive
Congrats on the results so far, and the tests they are running for celiac are awesome…you have a good dr.!
AnonymousInactive
yeah non-survivors sounds horrible!
Well, I have some great news! Quinn’s sweat test came back normal. She does not have cystic fibrosis. Whew… what a weight off my back. They are testing her for celiac still and we should get the results sometime this week.
Sleep study and PH probe placement is on the 22nd!
-Sarah
AnonymousInactive
Hey, thank you all for your well wishes.
the doctor ran a test called Prometheus Celiac PLUS. It includes both antibody and genetic tests.
tTg lg A, EMA lgA, Total Serum lgA, AGA lgG, AGA lgA, HLA DQ2/DQ8. Don’t know if that helps.
Oh man… i just hate seeing those words Failure to Thrive. That is what her GI diagnosed her as too and I found the words right on this sheet of paper I am looking at. It just stinks.
-Sarah
AnonymousInactive
Hi
I thank you all for the information and well wishes.
Christine- Quinn just had a celiac’s work up done last thursday. I should get the results by this week. I really hope they did it right… I do believe that he did. It was some blood work. The type was Prometheus Celiac PLUS. It includes both antibody and genetic tests. She’s also had a sweat test for cystic fibrosis.
She is also having a sleep study and PH probe done on the 22nd.
So, do you think I should ask her doc if perhaps she has thrush?
-Sarah
