Am I A Bad Mother? After Almos 1 Year Diagnostic Dont Wan To Retest My Kid.

[abigail]

hi! I just want your opinions because nobodyelse like you can help me .

last November my son Brian (now 27 months) was diagnosticated as celiac. After the blood test and the biopsy.

As a mother of course was very hard to see my son when they took him for the biopsy and how he cried when they took blood from him (twice, because the first time the hospital lost the samples!)

we went to the specialist an follow his instructions, and that how we started a gluten free life for him. but truly I think that the doctor didnt helped much after the diagosis, but the 8 books that I took from the library and this web site helped us a lot.

the thing its that we supose to go for a follow up, but why taking more blood from him or even another biopsy??

day by day we do our best to keep him gluten free, and to tech him all about it.

so if we go andthe test say that evrything its ok, great, because we do our best, And if they say he is "glutened" , hey ! we do our best an honestly we never put the guard down and we newer will...

so far he doesnt have the regular sintoms like he did a year ago ( the prominent belly, the diarria, etc)

so would you "blame" me if I dont take it to the doctor?? its worth it?

what would you do ?

thanks for your opinion, Abi

[Ursa Major]

Well, my honest opinion is that if he is growing, happy and healthy, then you must be doing a good job of keeping him gluten-free. Since you are right, that is all you can do, I don't really see the need for a blood test, either.

Keep up the good work!

[Karen B.]

Sorry if this message is long. I'd do the follow-up and ask the doc if the blood test is necessary. Since he's a growing child, the doc may be testing for other things like iron levels, calcium levels and so forth. I saw on another message string tonight where 2 people said they were diagnosed with osteoporosis at 11 and 12!

He has Celiac and you're doing your best but you (and when he's older, he will too) need to realize this is still something that needs regluar check ups to make sure nothing else is happening. And he needs to grow up with the idea that health maintenance is simply something you do. That's a life skill only you can teach him at this stage. My Mom always told me it'll hurt for a little while and then it will stop and after, we'll go for ice cream.

I don't have kids but I can give you a sick kid's POV from 30+ years ago. From the time I was 11 until I was 16, I was diagnosed with hepatitis, then after a year that doc admitted he didn't know and referred me to the local children's hospital. They said I had Lupus, told my Mom I had 2 months to live and started giving me lots of Prednisone. At 16, they said it must not have been Lupus because Lupus doesn't go away and whatever it was, I didn't have it anymore. I now think it was undiagnosed Celiac.

The life skills my Mom taught me at 2 or 3 with the regular trips to the doctor and the shots back then were invaluable when I woke up one morning at age 11 with bright yellow skin. The many blood tests were never fun but because of the way she taught me to deal with them as a necessary thing, made it much less traumatic than it seemed to be for many of the other kids I saw around me at the children's hospital.

Just my POV, YMMV.

[Ursa Major]

Karen, the difference between you and Abi's son is, that you were undiagnosed for years, which made you really ill. Abi's son will NOT grow up having severe health problems that will just sneak up on him, because he is on a gluten-free diet at a very young age, and will avoid developing all kinds of other problems.

In my experience, it is best to stay away from doctors unless you feel something is wrong. Because if nothing is wrong, they tend to 'find' something that 'needs' medicating, even if you are perfectly healthy.

And when you do have problems, they are more often than not completely clueless. The thing they are good at is emergency care after an accident for instance. But they are useless for maintaining good health. Because they are not trained in health care, they are trained in sick care, and in covering up symptoms with medications, rather than finding the cause of an illness and healing it.

So, personally, the only doctor I willingly see to make sure everything is alright is a naturopathic doctor, who actually had training in nutrition and understands about celiac disease and nutritional deficiencies. Plus, I find my chiropractor to be amazingly knowledgeable, he is much better at diagnosing me when something is wrong than my GP. I see my GP only when I want tests run or want a prescription for something, she is pretty much useless for anything else.

Okay, there goes my rant about seeing doctors when you don't have to. Nothing personal against you, Karen. Just my 2 cents after being dismissed by clueless doctors for 54 years.

[Adelle]

No you aren't a bad mom. I'm 23 and I'm not having any retesting. I had bloodwork done again like 3 months ago. I'm not ingesting gluten anymore (duh!). It didn't tell me anything I didn't know!! If your son is improving, stick to the diet, and let him have some time w/o pokies. If you do decide to retest, that's fine. But ur not a bad mom either way. And kudos to you for working so hard for your baby!

[Teacher1958]

You know that you are doing everything in your power to keep your baby gluten free. IMO, the doctor is just trying to cover his --- . I'm sure that there are families that are lax in keeping to the diet, so everyone has to be tested just in case. Personally, I wouldn't put him through it. My doctor suggested a gluten challenge for me to confirm the diagnosis, and I refused. I know what I have. I am going to have a colonoscopy because I've been having pain in a specific spot in my lower abdomen, but there's a reason for this- I am having symptoms. Your little guy is doing fine.

[jerseyangel]

My personal opinion is that if you're being careful, his symptoms have gone away and he's growing, his antibody bloodwork is going to come back normal.

Now, having said that, I went to a new gastroenterologist recently (I was undiagnosed for years and have other issues) and I let him run the antibodies. They were normal, of course, after being gluten-free and very careful for 2 years.

If your son had considerable deficiencies before, it might be worth it to check on those, but from what you've said, there's really not much of a point to putting him through all of that again.

[Karen B.]

Karen, the difference between you and Abi's son is, that you were undiagnosed for years, which made you really ill. Abi's son will NOT grow up having severe health problems that will just sneak up on him, because he is on a gluten-free diet at a very young age, and will avoid developing all kinds of other problems.

In my experience, it is best to stay away from doctors unless you feel something is wrong. Because if nothing is wrong, they tend to 'find' something that 'needs' medicating, even if you are perfectly healthy.

----snip----

My Mom took all of us kids to a pediatrician for regular check-ups. That's what caught my brother's asthma. Doctors have a hard time diagnosing Celiac because the symptoms are all over the place and the symptoms can mimic other problems. And yes, there are clueless doctors. If you don't have a good relationship with your doc, change doctors. But regluar medical checkups are even more important for Celiacs, adults and children. How many Celiacs on this board have only Celiac and nothing else? Yes, this child was diagnosed early and that may avoid other problems. But just recently, there have been a few conversations about other health conditions that became apparent only after the Celiac symptoms were resolved. If an issue is identified, then you make the decision to medicate or not - but you make the decision.

Fair disclosure -- Alternative medicine has put me in the hospital once, my Dad's side of the family doesn't believe in doctors at all and I seen kids suffer permanent damage because their parents couldn't stand to make them go through routine medical checkups and maintenance care. Modern medicine doesn't know everything and yes, blood tests hurt. Not knowing there's a problem can hurt worse and for a lot longer.

[NewGFMom]

If it were my kid... I'd get the blood tests. It's about 90 seconds of discomfort and you can find out if his blood sugar and iron levels are OK, etc. There can be stuff going on inside that he doesn't have symptoms of (like anemia) that you can solve painlessly now.

Just give him a tootsie pop or something you feel is an appropriate reward afterwards and it will be over. But I would not let them biopsy again for diagnostic purposes.

And you're a GREAT mom from the sounds of it. Your kid is very lucky to have a mom that loves him so much.

[Teacher1958]

I still wouldn't do it, but if you decide to go ahead, ask the pediatrician to prescribe a topical anesthetic cream for your son's arm before he goes in. You just have to find out the site they'll be using. I'm not sure of the particulars, but I am going to do this when I have to have my colonoscopy because IV's completely freak me out. I can deal with shots and blood draws, but IV's hurt a lot!

[Guest j_mommy]

For me it would come down to.....is he better(ie no syptoms) after going gluten-free?????

My Dr told me if I was better they probablt would do more blood tests just to check antibodies. If I wasn't feeling better....they would do another biopsy....b/c then it could be refactory celiac(i think that's the right name...the kind that does not respond to diet change).

You have to decide what's best. I definetly don't think you're a bad mom if you choose not to go. I would do blood tests and be done if he has no syptoms! Good Luck

[Fiddle-Faddle]

I seen kids suffer permanent damage because their parents couldn't stand to make them go through routine medical checkups and maintenance care.

Just curious (not challenging you)--what sort of permanent damage?

[abigail]

thank you all for your opinions, as Im reading them and I feel very lucky to be part of this forum.

this world may not be quite ready for celiacs , not even the doctors, but having this common place make me feel very content.

thank you for being here!!

Abi

[Karen B.]

Just curious (not challenging you)--what sort of permanent damage?

Sorry if this is long, it's not a short answer.

One kid that is mentally retarded because his Mom refused to have anything to do with the tests and doctors when she was pregnant and insisted on delivering at home. So when there were complications at birth, there wasn't any medical help at hand and the kid sufferred permanent brain damage. I found out on the birth announcement they sent out when they said he needed help feeding. I had gotten the whole "Doctors are just after your money" speech from the Mom the whole time she was pregnant.

My co-worker's son nearly lost his thumb because of a phobia of needles and doctors. He ran his hand through a window, told his Mom it was fine. She didn't insist on looking at it and it wasn't until he became feverish that she realized he really did need to go to the doc. He was about 8 when this happened. Since he had been very little, he was scared of needles and instead of helping him learn to deal with it, they only took him in for the required vaccines and nurses held him down. By the time he was 8, medical care was a huge traumatic thing. After nearly losing his thumb, they realized they had to help him understand that medical care may not be fun but it's necessary.

Quite a few of the kids I saw at the children's hospital were absolutely hysterical around medical personnel because no one had taught them how to handle medical treatment. I think you do your kids a tremendous favor when you teach them that "it only hurts for a short time but it's something that has to be done and we'll do something fun later." Make them part of their healthcare instead of doing it to them. You can't protect them from it. Everyone needs medical care at some point. Regular checkups with no shots help kids get used to the idea that it doesn't always hurt, the doctor is on your side and this is something that isn't optional. Otherwise, you are setting the kid and the doctor up for a huge trauma later.

As previously stated, I have no children, I'm not a Mom. These are just my personal observations from growing up going to a children's hospital. YMMV

And no, no one is ever a bad Mommy for being the kid's advocate with the medical professionals and asking why something is necessary or pursuing a second opinion or changing docs until she finds someone she feels is looking out for the kid's interest. If I had a kid that was a biopsy diagnosed Celiac and the doc wanted another biopsy, I'd have to be convinced that there was a reason for it. And the only reason I can think of is that the kid is still sick.

[JennyC]

My son was diagnosed nearly 4 months ago by blood work alone. I plan to get him retested at 6-12 months to be sure that his blood levels are coming down. At that same time they can also screen for many other things. Some of the things that I plan on requesting are tests for tissue antibodies, such as liver, pancreas, gall bladder, and thyroid. I've read that these are often present in celiac patients (diagnosed VS non-diagnosed?), and can be a sign of an increased risk for diseases like diabetes and thyroid disorders. My point is that you can get a lot of information from one prick. If your child has not yet been allergy tested this would be a great time also. I too give my son treats afterwards in an attempt to sympathize, but children with celiac disease need to become accustomed to many different types of medical care, including blood tests. It will forever be apart of their lives.

That being said, you are not a bad mom. There are so many new decisions to make regarding this disease. We all want to do what is best for our children, and none of us want our children to experience pain. It really comes down to what you think is right.

[Fiddle-Faddle]

The idea of more blood work doesn't bother me, at least for the most part. I don't view that as particularly invasive, especially compared to a biopsy. My kids have never freaked out about needles. I used to have them practice pinching themselves and count to 10 so they could gauge how much they could handle. They actually thought it was funny. It is not risk-free, however. Hospitals are an absolute HOTBED of germs, some of them extremely dangerous, and it only takes one phlebotomist who hasn't washed hands...I get blood work for thyroid done frequently, and I am astounded how many of them don't wear gloves, or don't change gloves between patients, and don't wash hands.

Back to the discussion, though--if the doctor feels that there are more questions, I would ask what he is looking for before doing blood work. As far as another endoscopy, that is much higher in risk than blood work. I would NEVER assume that a doctor has a good reason for ordering a repeat endoscopy. I would ask what the reason is, and then go and research it before even considering it as a possibility.

And, OF COURSE you are not a bad mother. If the doctor is trying to make you feel like one, find another doctor--one who cares enough to tell you everything, without trying to manipulate you.

[gfpaperdoll]

Oh Shucks, if the kid is growing, happy & healthy, forget the blood test, it is just a year if you want to you can do it next year. I find that if you have insurance there is always something they can test you for...

You could test thru Enterolab, a non invasive stool test - at that age the kid would not even know etc. etc. I think Enterolab is great.

You are the Mom you do not have to get every test the doc suggests, I would be dead by now if I had let docs do everything they wanted to do to me...

[lob6796]

I would get the checkup. If only just to tell the doctor that he is doing well on the diet, etc. The doctor may have reasoning besides looking at antibody levels for wanting to take blood. At a young age, it is easy to have malnutrition problems. He may want to check certain vitamin/mineral levels in his blood to be sure they are back up to normal again. This is important. I also think it is important to re-do antibody levels so that a) you know for sure there isn't a small amount of gluten still slipping through (at 27 months he could have minor symptoms he isn't expressing and you can't see) and so you have a baseine to go off of if he ends up being sick sometime in the future, they can recheck the levels and if they are gone up, they know what the issue is.

I don't like watching my kid scream and cry and get poked, but I would rather 2 mins of discomfort than for me to have missed something because she "seemed ok".