Miracle Workers Advice Needed

[gfgypsyqueen]

Hi,

I know this is not specifically celiac related, but I have a 2 yr old with a problem and this is the most medically knowledgable group of people I have ever known! So I am hoping ANYONE can add some advice and maybe something will work.

My 2 yr old just got ear tubes. The reason for the ear tubes was a recurring severe ear drum perforating ear infection that is non-responsive to medication. They took a culture and the virus does not respond to quite a few medications. The only cure for the ear infection was three shots of Rocefin. That is a very strong broad spectrum antibiotic. The hope is that the ear tubes would keep the middle ear from building up fluid and stop the ear infections. Well, like clockwork, it's 5 weeks from the last infection and she has a runny nose that is getting worse.

Does anyone have any advice??? Any ideas???

She was tested for celiacs and we were told she has "Chronically inflammed intestines". She takes probiotics to try to help the intestines. She takes liquid vitamins. She has a dairy allergy and a penicillin allergy (thanks to all the ear infections!). I would not be shocked if she had more allergies. But right now I cannot get an apt to see the alternative dr for a few months.

Thanks in advance for your help

[kbtoyssni]

Chronically inflamed intestines? I wonder what causes that. Certainly it could be celiac or another food allergy. About the dairy: do you think it's lactose or casein? Casein can be in a lot of lactose-free products so if you're just lactose-free, you might want to consider going casein-free. Testing for celiac is also unreliable, especially in younger children, so if it were my child, I wouldn't be completely confident in the not-celiac diagnosis. Have you tried going gluten-free? I feel dietary response can be the best method of testing. If she has celiac, you'll know soon enough.

EDIT: Ok, never mind the casein stuff, I just read your signature and I guess you're already CF!

[gfgypsyqueen]

Hi kbtoyssi,

The gastro who diagnosed me I would trust with my life. He was excellent! But we no longer live in that area. The Gastro that my daughter goes to is good, but we have a hard relationship. Literally heated debates at the appts. It is strange. So, I listen and we discuss, but I do not fully believe his diagnosis. Our latest debate is to get a lactose gene test. I can't see the point or want the cost. The Dr is insisting. I am waiting to bundle that blood work with the allergist - if they use blood work.

I am not 100% sold that she does not have Celiacs. The results were inconclusive and she has one gene. But, like most of us, I would not wish this disease on someone, so the doctor recommends pursuing the dairy free diet first. She has finally shown signs of growth and improved health since going DF. I treat DF like a food allergy. She gets nothing that contains a trace of a dairy product (whey, casein, lactose, lactic acid starter cultures, etc). She has a visible reaction when she gets dairy. She had the same reaction to shellfish once. She does not get any more shellfish or seafood until we can get to the allergist. She doesn't get anything cooked on a restaurant grill until we can get to the allergist. I think there is a huge seafood contamination issue on the grill - just my opinion.

So she is still stuck with the constant illness. I have no idea what to do to build up her immune system. She has a virus that she just is not getting rid of. Aside from throwing out everything in her room, I really don't know what to do to get her healthy permanently. These constant heavy duty shots of antibiotic cannot be good for her system and are not helping to get rid of this drug resistant virus. And we are creating a child who is beyond terrified of the doctors now.

I need some advice on what to try next. Any thoughts?

[aikiducky]

I vaguely remember recurring ear infections could be a complication of untreated celiac? I suppose it would make sense, because a child with celiac who is still on gluten would have an overworked immune system that is maybe too overwhelmed to deal with the virus. I don't have any articles or anything for you though.

Have you tried the diet with your daughter at all? Sometimes the only way to find out is to try and see what happens.

I wonder if they samples of the biopsies were kept somewhere? Would it be possible to have a second opinion, have a celiac expert have a look at them? Apparently interpreting biopsies for celiac is tricky and someone who hasn't done lots of them can miss the damage. Also, your doc might be going by the definition of celiac = complete villous atrophy, while nowadays they do diagnose people with less complete damage.

Pauliina

[Fiddle-Faddle]

I couldn't tell from your post--is your daughter gluten-free as well as CF? Could soy or eggs possibly be a problem as well?

Another thing to consider is that vaccines can have serious side effects, especially when a child at risk (for example, a child with serious food sensitivities) receives many vaccines at once. There simply are NO long-term studies on what effects there might be from receiving multiple vaccines.

I don't like to suggest avoiding vaccines, because some of the diseases they prevent are deadly. But I think it is wise and prudent to spread them out, and have your child only receive 1 vaccine at a time. Also check to be sure that the vaccine does not contain thimerosal, as that is a neurotoxin (49.6% mercury), and if your child has leaky gut, the consequences can be devastating.

Last summer, I checked with the Pittsburgh Health Department, and, while the MMR did NOT contain thimerosal (in fact, it never did), the separate measles, mumps, and rubella vaccines each did contain thimerosal.

When my daughter was nearly a year onld, she got her first ear infection. We did NOT treat it with antibiotics, and it went away on its own in about a week. And I felt very smug. But 2 weeks later, she got another one. So much for feeling smug! But this one, too disappeared on its own, after 4 days. And I breathed a sigh of relief--until she got another one 2 weeks later! I thought, "My goodness, we're going to be going through this every 2 weeks forever!" But this one only lasted 2 days--and she never got another one.

Our pediatrician says that this is how the immune system is SUPPOSED to work, but usually can't because most peds give antibiotics at the first sign of an ear infection, even though according to our ped, 90% of ear infections are viral, and most of the bacterial ones do not NEED antibiotics.

Important to note, though--our pediatrician checked our daughter's ears every couple of days while we waited it out. I wouldn't recommend waiting it out without being monitored by the pediatrician, and without their approval.

In fact, in your case, I'm not sure waiting it out is a good idea at this point because there seem to be an awful lot of things going on

I've heard some people swear by garlic oil drops in the affected ear, but I have no experience with that.

There's always chicken soup (but I wouldn't put it in your daughter's ear!)...

Can your alternative doctor recommend another alternative doctor in your area? Several months is an awfully long time to wait for a 2-year-old with serious problems.

Lotsa luck!

[gfgypsyqueen]

Hi,

She had a celiac intestinal biopsy done a few months ago. Promethius labs did the analysis, so I trust the results being inconclusive. Same lab did the blood work and gene tests.

Currently she eats what I would call low gluten. I am gluten-free. She usually eats my meals when we eat out. I try to buy dairy free food that is also at least gluten-free (for me) and if at all possible nut free. Trying hard to minimize the duplicate special foods in the house. All dinners are gluten-free. Mosts breakfasts are gluten-free. So lunch are some snacks are the only real source of gluten for her. (She ate large amounts of gluten before her biopsy.)

I think she may have additional food allergies (we have enough of them), but the allergist appt had to be moved out to next month. So far she is Dairy free and shellfish/seafood free and nut free.

Vaccines...she is seriously behind. Her last vaccine was over a year ago. When her health started going bad we were moving and I won't let the Pediatrician give her more vaccines until her health improves. She is scheduled to start catching up on vaccines at the end of the month. The Dr knows I do not want her having any mercury...amazing that they put it in vaccines when there seems to be a link with some really bad side effects! Anyway vaccine are now debatable for the end of the month...

My kids have a history of bad ear infections that rupture ear drums, so no meds is not an option. Too many ruptures (burst ear drums) can lead to hearing loss. I will look for the connection between ear infections and celiacs...that would be interesting to find!

I hate to switch alternative Drs becuase the one that I go to is amazing! However, I might be forced to look for a new one who can see the 2 yr old soon. Clearly traditional medicine is not working in her favor!

Nobody said having kids would cause me to become obsessed with medical issues! It drives me nuts!

Anyone have any thoughts???

[aikiducky]

Not any very revolutionary thoughts, but I'm thinking that since she's almost gluten free already it might not be too hard to try completely gluten free for a while, just to see if it helps?

Pauliina

[Fiddle-Faddle]

Not any very revolutionary thoughts, but I'm thinking that since she's almost gluten free already it might not be too hard to try completely gluten free for a while, just to see if it helps?

Pauliina

Exactly what I was thinking! If her intestines are chronically inflamed, and her mother has serious enough problems with gluten to need to be gluten-free, seems to me that the most likely culprit would be gluten, even if she is gluten-lite.

Nothing to lose by going completely off gluten (except pain)!

I agree with you on the ear infection/ruptured ear drum issue. I gotta wonder, though--what is causing this susceptibility to ear infections??? When I was a child, I never ever heard of anyone getting ear infections, and now it seems to be so common, most moms think it is normal--but I'm not convinced. Something is CAUSING this drastic increase in ear infections!

[Cheri A]

Nobody said having kids would cause me to become obsessed with medical issues! It drives me nuts!

ITA! I feel the same way!!

We are also at the point where conventional medicine doesn't work for all aspects of Carleigh's allergies so we have sought alternative treatment for getting to the root of the issues and not just throwing steroids and drugs to treat the symptoms of the allergies.

((HUGS)) for all that you are going through. I don't really have any helpful info on the ears for you. Have you ever tried Sweet Oil in her ears? I have heard that it helps with pain and some things. It's very soothing going into the ear.

[gfgypsyqueen]

Thanks for the replies. The really sad part is the child shows no signs of an ear infection and does not react normally to the pain of a rupture. I mean runny nose and not sleeping alone content through the night - those are her symptoms. That is it, then shocker, she gets a high fever and is unconfortable at night, eventually the ear drum burst and she settles in for a deep sleep. It is not normal. She still runs and plays like crazy during the day when she is getting the ear infection.

My older child had the ear infection routine but she would be up all night screaming, fever, miserable, then inconsolable screaming and the ear drum would finally burst. That sounded more normal.

Well, the job scene just changed, so she might be easier to make fully gluten-free after all. Making the daycare go DF is hard as it is, and they were already hesitant about being able to handle gluten-free. I swear people act like Celiacs and allergies is a form of leporacy! So frustrated!!!