Advice Getting Our Granddaughter Tested

[Korwyn]

Our granddaughter is 4 and is showing some of the classic childhood presentation of celiac disease. My wife has had the genetic testing and she carries DQ8 and DQ6. We know the genes are present and my wife is slightly sensitive to gluten. There is also Northern European and Irish descent on all four of our granddaughter's bio-grandparents.

• Stunted growth ("She's just small"). No, she is in the BOTTOM 2nd percentile for growth (Yes, I understand there has to be somebody in the bottom percentile or there wouldn't be a bottom percentile). However, she was normal weight/length at birth and not premature. Her dad is normal height (5'10), and her mom is above average (5'10). There are not many short people in her genetic pool for the last three generations, and most are above average height (6'2", 6'5", etc).
  
• Raccoon eyes ("Oh, that runs in the family"). No, really. As in people ask, "Did she fall down?", "She looks like somebody punched her in the eyes!", "Does she have allergies?", "Does she not sleep well?", etc. Within days of when she stopped breastfeeding! The formula they put her on had wheat as the number two ingredient!!
  
• Protruding belly ("Oh, she'll grow out of that"). She looks severly bloated all the time, like somebody needs to feed her Gas-X.
  
• Thin hair. It is long and silky, but very, very thin.
  
• Bruises easily

We offered to pay for genetic testing and our son's fiance (not her mother) said, "Well you can but we're not going to eat like you guys do." We certainly can't afford to pay for a full blown lab and biopsy out of our pocket. We can't get them to bring it up to her pediatrician, and our son won't press the issue as he is so passive and afraid of making decisions he'd be hard pressed to decide to move out of the way of an oncoming freight train. Her mother is not someone we want to get involved in this for a number of reasons (all bad).

Does anyone have any ideas on how to get them to talk to the pediatrician and look into this or am I just being hyper-sensitive (since I DO have celiac disease as do my Dad and sister)?

[Asianmom]

Could you call their pediatrician and let them know who you are (relationship to child), what your concerns are, and see if they (the pediatrician) will bring it up to your son and fiance. Perhaps you can let them know the discussions you have had and why you are so worried. At this point wouldn't she be considered failure to thrive by a ped, since she was average height and weight until formula was introduced with wheat and now is at the bottom 2%. This should be drawing red flags to the ped anyways. Many pediatricians do not think of this first off. I have Celiac and I had to bring it up to my ped, who is wonderful, about my son...all same symptoms and it took me a while to put two and two together. He was almost 3 before we went gluten free with him, but by then he was complaining of stomach aches all the time. Perhaps if you put a bug in the peds ear, then at the next check up they could suggest it? Maybe the fiance is not taking it seriously because she feels it is just a "dietary choice"? I know many people who just think it is no big deal do not understand the seriousness of celiac. I think it is great you are offering to pay for the testing. What a great grandparent! Good luck!!!

[kareng]

I think call the pediatrician. Just be aware that many of them don't want to be confrontational. Even though this could be considered neglect, many don't want to get involved. It's the law but a doctor could rationalize as its not diagnosed, etc.

Perhaps you could get your son alone and talk to him? You might let him know that if she continues with whatever may be wrong with her, when she is in school the teachers will notice. If he refuses to get her help then, they will have to call CPS, its the law.

I don't think you should threaten to call social services yet. But it is something to think of in the future. Are you prepared to take custody at some point? The fiance sounds like a problem.

Good luck! It is frustrating to see someone doing the wrong thing & you can't so much.

[sreese68]

We can't get them to bring it up to her pediatrician, and our son won't press the issue as he is so passive and afraid of making decisions he'd be hard pressed to decide to move out of the way of an oncoming freight train.

Not sure I have any good ideas for you, except to maybe keep your granddaughter at your house for a few days and see how she feels off gluten (maybe this would be an eye opener for your son?). I just saw the above and wondered if maybe your son should get tested, too? His apathy or fatigue or anxiety over making decisions or whatever it is that's making him this way could be celiac related.

Good luck!

[domesticactivist]

Without having met your son and daughter-in-law, and without knowing what you've tried in the past, it's hard to say what approach will be the best. I'm assuming you've already tried to educate them about celiac? If that didn't go well it can be really hard to start over. They seem to be focused on the life-style effects of celiac rather than the medical issues it could cause untreated. This is the aspect of its effects on you that they have the most visibility into.

I think an approach that might work is to ask them for a formal discussion about it, in writing. The letter should not have details in it. It could be something like:

Hi _____________,

I'm sorry about the way I've brought up my concerns re: gdd's health in the past. It may have seemed like I was trying to impose my lifestyle on your family. I respect you as parents, and I know that gdd's medical care and diet is not my decision to make.

Because of my own health problems, I am still concerned about gdd's health. It is difficult for me to understand why you have been unwilling to test gdd in the past, and I would like to understand your reasons. I would also like to share the information I have with you, so that I can feel that you are making the most informed decisions possible for gdd, and be able to really let go of trying to tell you what to do!

Would 2 hours on ___________ at ___________ work for you?

Love,

_____________

If they agree to meet:

1. Come with a compassionate mindset. Assume the best about them and their motives, no matter what they say. The more bent out of shape they seem, attribute that to intense love and fear for their daughter's well-being. Express sympathy, and show that you are listening to their concerns and feelings. Say things that show you understand they are doing the best they can by their daughter.

2. Have a few key points you want them to understand and stick to those. This is not the time to tell them every personal horror story about celiac, or to share all the details of a diet. This is the time to be very clear and concise. I think the points you might want to make are:

- You understand gdd might not have celiac

- Testing for celiac does not mean that they have to do things just like you

- Testing for celiac will give them information, on which they can base their own decisions about treatment, with the help of their doctor.

3. Rather than launching into the details of complete testing, I'd have something written up to give them. This could either be a published pamphlet or something you write yourself. I'm not up on my books re: celiac at the moment, but if you have a favorite you could leave that with them as well.

4. If they got her tested and results came back negative, what would your reaction honestly be?

They may assume that since this matters so much to you, no matter the test results you would still want her off gluten. I know that's how I would feel. However, it is not your decision. Let them know that as much as you have strong feelings about food allergies and celiac, and that there are false negatives, you know it is their decision. Really know this, otherwise they won't hear a thing you have to say.

5. I'd stay away from pointing out her symptoms, and focus on how you really want them to test her for your peace of mind.

If you can do this, you will be setting the stage for future interactions that are less strained, and will make them a bit more open to listening to you, eventually.

If they do not agree to meet with you or you try and it goes very badly, I recommend seeking the services of a mediator. In my county, the courthouse even has some free mediation services available to families, and there is a private non-profit mediation service as well.

I never thought mediation could work, but I did do mediation with my ex-husband last November. It was difficult to get him to agree to go, but other people convinced him to give it a try. Our first session was HELL, the second sucked, and by the third session the mediator told us we could come back if we wanted to, but she didn't see the need. Mediation is different from therapy, because it is aimed at getting a solution that works for both parties. It doesn't assume that you are trying to actually agree with each other. You don't have to convince them you are right to get them to test your gdd. Remember that.

If mediation isn't something you can get them to agree to, then you can take further steps. You may be able to get a court to agree that she needs to be tested. I don't know what that process would look like, and it would be a last resort. I don't think that getting DHS involved is a good idea unless there is other abuse or neglect involved in the situation and only as a last resort. For one thing, they don't do a ******* thing even in overt situations (I know from experience with neighbors). For the next, if you do that you set things up to be adversarial with the parents and possibly completely cut your granddaughter out of your life. A step like that will only damage your relationship in the long run.

Just in case of the unlikely event that court or DHS is the step you eventually need to take, start documenting the situation YESTERDAY.

Write down the symptoms you have observed.

Write down your attempts to get her parents to test her.

Write down the things they have said re: not testing her/not wanting to have to make changes for her health.

Get reputable sources of information put together explaining why she should be tested.

Good luck!

[ryebaby0]

I don't think any reputable pediatrician will speak to you about her situation, since you are not the parent and HIPA laws would keep them from discussing your gdd as a patient. Not to mention it is likely to really annoy the other adults involved.

I think the idea you want to convey is that it would be good to know if she is celiac, it would be useful to know that sooner rather than later, and it would be easier to live their lives with full information rather than not. However, you can't make those decisions. We all wish you could, she certainly sounds like a candidate for testing, but it won't ever be up to you. I would keep lines of communication open and be a kind, listening ear: if your gdd really is celiac, that's going to become more and more apparent, and you don't want your son to avoid the diagnosis in order to avoid you being right all along.

And tell him this, if you'd like ---- my son was ready for an endoscopy at 4, and we decided we were overreacting and cancelled it. By age 9, he was hospitalized for 2 months, convalescing for 6, because he was undiagnosed when we had the chance.

[kareng]

I don't think any reputable pediatrician will speak to you about her situation, since you are not the parent and HIPA laws would keep them from discussing your gdd as a patient. Not to mention it is likely to really annoy the other adults involved.

I think the idea you want to convey is that it would be good to know if she is celiac, it would be useful to know that sooner rather than later, and it would be easier to live their lives with full information rather than not. However, you can't make those decisions. We all wish you could, she certainly sounds like a candidate for testing, but it won't ever be up to you. I would keep lines of communication open and be a kind, listening ear: if your gdd really is celiac, that's going to become more and more apparent, and you don't want your son to avoid the diagnosis in order to avoid you being right all along.

And tell him this, if you'd like ---- my son was ready for an endoscopy at 4, and we decided we were overreacting and cancelled it. By age 9, he was hospitalized for 2 months, convalescing for 6, because he was undiagnosed when we had the chance.

The doctor can't talk to the grandparent without permission or court ordered custody about the patient. But the doctor can listen or read a letter you send expressing your concerns.

People do this all the time when they tell their elderly parent's doctor that they are forgetting things or not acting like themselves.