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Lanigan's Results Are In...

andersonfam06

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andersonfam06 Apprentice
andersonfam06
Posted

So, all of his results are in. His biopsies look okay, aside from some esophageal damage, and some damage in his colon. Fairly minor, but doc said it would be worse if he wasn't only 10 months old. He is allergic to nothing(the 20 food allergy panel) and all other test results look fine. Oh, he is slightly anemic. So, I have now been told that I have til the 21st of the month to "fatten him up" if I want to "keep him"... what the HECK does that mean!? The doc had said previously that if all tests look good we'd put him in the hospital, so does he mean keep him out of the hospital?! I don't know, but I am kinda freaking out. He throws up so often, and has such bad "d"... I feel so bad, and now even more helpless than I had before. Oh, and he has been gluten free for about 2 weeks now... Not much of a change, but I think he might be getting sick, he is running a fever today of about 101.8. He does this about every 3rd day. Kinda odd I know...

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Nic Collaborator
Nic
Posted

I think you need to get some clarification on what that doctor meant by "if you want to keep him". And then maybe you need a second opinion. Why would his colon be damaged and why does he have these symptoms including a fever every 3 days? This doctor is missing something. Good luck, let us know how it goes.

Nicole

key Contributor
key
Posted

Have you looked into Crohn's disease?? This can have fever and damage to the colon. If he is that sick, it sounds like he probably needs to be put in the hospital. Testing for food allergies at his age isn't accurate, so that is useless. IMHO.

Where do you live?? I would try and get another opinion from another pediatric gastroenterologist.

I did notice a change in my son after just 3 days gluten free and definitely by two weeks, but everyone is different. You have to be sure that he is abolutely gluten free in order for it to work. Maybe you already are doing this.

HOpe you find the answers.

Monica

Luvs to Scrap Apprentice
Luvs to Scrap
Posted

Luke has been gluten-free for about 1 1/2 months and he still has D. Not as bad as before but it is taking time. My DH took about 6 months to feel noticeably better and a lot better after 8 months. I think the Dr needs to clarify what his comment meant though.

I continue to pray daily for Lanigan and hope that they figure out how to help him SOON! Kendra

TCA Contributor
TCA
Posted

I have thought of Lanigan often during my own daughter's hospital stay. I hope you can get answers soon. It took my son about 3 weeks to show improvement going gluten free. Forgive me for asking, but are you sure he's not getting ANY gluten? No cross contamination or anything? I t took us a while to get a hold on the diet and I made a lot of mistakes at first. I think I"d look for a 2nd opinion too, if you can at all. I'll keep praying!

andersonfam06 Apprentice
andersonfam06
Posted
  • Author

I am pretty sure he is entirely gluten free. I am not POSITIVE, as I am human and I screw up lots, but pretty darn close to positive. I have been on the diet myself before, and fell off of it, so it's not like I am just starting from nothing...Know what I mean? I am getting so stinking frustrated though. He was in the ER tonight, because his fever spiked to 104.8. Not even 3 weeks ago he was there with a temp of 105.3. All they really found was an elevated white count, but nothing major. It was boderline elevated... But I am so stinking frustrated. I mean, something HAS to be going on! And I do NOT have Munchaussen by proxy! I can't make my son have a fever. Or elevated white count. Oh, I could just spit fire...

But, we have to go back for a follow up tomorrow. See what his temp is doing. I am really starting to get worried. I felt such relief when we finally got our referral to the GI doc. And now that he has found NOTHING, I feel so... oh, i don't know the word..

Thanks everyone for the prayers...

Guest nini
Guest nini
Posted

you may want to try eliminating dairy for a bit too, sometimes that makes a difference.

That Dr. is def. missing something. Def. get clarification what he meant by his comment and def. get another opinion. The tests are so unreliable in small children and the allergy screening is useless if it's an autoimmune problem. One thing Dr.s don't seem to get is that not all food intolerances are specifically Celiac, so if Celiac doesn't show up on tests they shouldn't ignore food intolerances.

The Chiropractor/Dietician that I'm working with now (I work out of his office) says that he believes 1 out of 2 people is gluten intolerant. And many of those people have multiple food intolerances.

Keep a food diary and look for patterns, also, make sure his personal care products are also gluten-free, bath soaps, shampoos, lotions, toothpaste, vitamins...

maybe if you post what you are feeding him with specific brands, one of us might be able to find if there are any hidden glutens in what he's eating.

Oh and don't know if you've let him play with play dough or finger paints, but play dough is made from flour and most finger paints contain gluten.

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angelsmummy Newbie
angelsmummy
Posted

Hey darling I really feel for you, I am with everyone else in agreement that the DR is missing something!! How and why would a child have all the symptoms with no cause, has Lanigan got a 'normally' developed bowel? The reason that I ask, is because of Thayne's symptoms at one time they wondered if he had some sort of twist in his bowel, resulting in the fever, colicky cramps, diarrhea, constipation and vomiting.

This is when they started thinking spasmodic intussusception, that can be aggravated through celiac's. Good luck honey you know that it is safe to come on here and SCREAM!!!!!!!!!!!!!! We understand the flames and spit aren't at us :P

Take care Jacinda and Thayne

andersonfam06 Apprentice
andersonfam06
Posted
  • Author

We are headed back to the Dr this morning. His temp is 105.3. I do realize this could very well all be unrelated, but I am finding it hard to believe. They find NOTHING wrong with him. His white count is slightly elevated. I find this all so hard to believe. That trained medical professionals are putting this off on me, instead of doing their jobs. Or at least admitting that they can't do their jobs. And have no idea. There is no way known to man that I could ever make my son have a blasted fever. AHHHHH!! well, i am off. .. ill post again when I know more

TCA Contributor
TCA
Posted

Just wanted to send a hug and let you know I'm still praying! (((((((((((((((((((HUG)))))))))))))))))))))))

andersonfam06 Apprentice
andersonfam06
Posted
  • Author

thanks for the hugs... they are much needed....

i am just so frustrated with the whole medical field. so yesterday we go in, his temp is 104.8, they tell me not to worry, its not a big deal til it hit 105(til it hits, goodness could we have been much closer?)... so this mornign we go in, temp is 105.3, they tell me not to worry til it is 106. can they make up their blasted minds already? seriously! anyway, if he has 3 days of elevated temps, they will discuss doing more. so, hopefully it stays down better this afternoon. they are assuming it is a virus, which this very well could be, but his labs don't show virus. they are dxing him from his rash. hmmmmm, he almost always has a rash... whatever. we'll wait one more day... i am about to drive to a different hospital all together.

KayJay Enthusiast
KayJay
Posted

That is so horrible. I hope his fever goes down and stays down you must be so scared. Praying for answers very quickly!!

jerseyangel Proficient
jerseyangel
Posted
thanks for the hugs... they are much needed....

i am just so frustrated with the whole medical field. so yesterday we go in, his temp is 104.8, they tell me not to worry, its not a big deal til it hit 105(til it hits, goodness could we have been much closer?)... so this mornign we go in, temp is 105.3, they tell me not to worry til it is 106. can they make up their blasted minds already? seriously! anyway, if he has 3 days of elevated temps, they will discuss doing more. so, hopefully it stays down better this afternoon. they are assuming it is a virus, which this very well could be, but his labs don't show virus. they are dxing him from his rash. hmmmmm, he almost always has a rash... whatever. we'll wait one more day... i am about to drive to a different hospital all together.

Oh my--I just want you to know that I'm saying a prayer for your baby. The poor little thing--I'll be looking in to see how he's doing. Hope you both get an answer soon :)

penguin Community Regular
penguin
Posted

Maybe I'm a bit of a worrywart, but I would drive to a different hospital...

Open Original Shared Link

I don't know much, but I do know that a fever of 105 is bad news!!!

Nic Collaborator
Nic
Posted

My kids always run fevers that high with viruses. Especially the few times we had the coxsachi virus. We have seen fevers up to 106 and there usually is a rash. But if you call the doctor or the hospital they with just say, "is he eating, is he drinking, is he lathargic (sp?). As long as they are drinking and coherent, they say don't be alarmed. I find anything over 103 alarming personally. Good luck, I hope it is a virus and nothing more.

Nicole

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