Mannatech? A phone call that was a little offensive

[Leslie Nelsen]

Hi All,

I had a couple of questions. On Sunday we had a notice in our bulletin about Eliana and a little information about what we were dealing with so that people could pray for us. I received a phone call from a member of the church that I don't know saying she wanted to share some info with us. She encouraged one or both of us to attend a meeting at a local health food store to learn about a product that could help our daughter. She talked some about the benefits on "this product" and what a great thing it would be for our daughter.

I asked what the product was and she told me glyco - something (I can't remember) and it was made by Mannatech. She went on to tell me about this video that she'd seen and of a couple of pictures of a girl with DS when she was younger and then another when she was older. Well, this "amazing product" had helped her so much that she graduated at the top of her class AND to look at her you couldn't tell she had DS anymore. :perplex: She thought when I saw this that it would encourage me to want this product too.

After talking some more, she told me that if I decided to buy the product that she would appreciate me sharing her name. She is selling this stuff! She assured me that she was sharing this info as a sister in Christ. She asked if she could call me again if I didn't make it to the meeting. She also asked to pray with me. Then she prayed that God would nudge me to attend this meeting and to buy this if it would benefit Eliana.

After getting off of the phone and thinking about it - it really started to irk me! I don't know this woman at all - and she doesn't know me or anything about me (other than the info in the bulletin about our daughter). She is trying to sell me something that could "fix" the way my daughter looks. :cry: Helping brain development or other physical health benefits - but her looks? This just made me sad. My beautiful daughter doesn't look like everyone else, it is true - but she does look the way God made her to look.

I keep telling myself that I'm sure that this woman didn't mean to offend. She seemed excited that I could start my daughter on this now and how much more she could be helped than the girl in the video. Though she "couldn't make promises as she wouldn't want me to sue her". :eek:

OK - am I off base here? Does this seem inappropriate to anyone else? Is this really a product that is going to change my daughter? Anyone ever heard of it? (I can't imagine that it can undo something that is genetically encoded into every cell of her body.)

Please be gentle with me if I'm being too sensitive here.

Thanks,

[Katherine in CA]

Oh, Leslie, I'm sorry that somebody was so insensitive and had such poor boundaries!

Another friend of mine also had their Downs child on Manna Tech, and it seemed to boost his immune system a bit, but it was so expensive that they couldn't stay on it. And who knows, maybe his immune system was maturing by itself anyway.

I'd pass on purchasing this supplement. And I'd just try to forgive her for overstepping her boundaries -- she probably really believes that this stuff could help and was just trying to help.

[Linda]

:group:

No, I don't think you're being too sensitive. I don't think you can be too sensitive right now anyway Leslie. :kiss:

You know, quite a few years back I was having problems w/ my Ulcerative Colitis and shared here on the boards my struggles. Someone from the boards, I can't even tell you who it was because I don't remember their name and I don't think it was a "regular", kept emailing me to log into this phone seminar. That I could be "healed" w/ this product and yes, she was a distributor. :eyes:

Even though it was me, and not my child, it kindof freaked me out a little. :lol: She eventually stopped emailing me as I was no longer responding but I did get one last email maybe a year after the correspondence had stopped.

I think to solicit anyone preying on their vulnerabilities is wrong. Even if this was some miracle cure, it's the wrong way to go about it. And honestly Leslie, if this was a miracle cure, you would have heard about it before now. That's my opinion of course.

Big hugs and continued prayers for you sweet Leslie! :group:

[Carol S]

Well, I think that she probably does really believe it could help, and she's probably very enthusiastic about her product, so I do hope you can just forgive.

But I would be extremely irked myself and if I were the one in the situation it would probably take me a while to talk myself down. If she had approached me and told me that she saw the info in the bulletin, told me FIRST that she was a rep and had a product that she had seen to be beneficial in similar situations, and then just left me a card, well, that would go over a lot better with me.

[BethCO]

I am so sorry Leslie. :(

I have heard of the stuff. When Jim was so sick someone tried to sell us the stuff. They gave us a dvd and some info on it. Then someone bought us a sample of it. Maybe we didnt give it long enough, maybe we werent a success story...who knows. It didn't work for us. :unsure:

[Miranda]

I would probably give her the benefit of the doubt. Maybe she was really just trying to help. It doesnt seem right though because you put it in the bulletin for prayers not for someone to try and sell you something. That is kind of rude.

I have never heard about that product but it does seem kind of strange. A miracle cure!:eek: Our oldest daughter has cerebral palsy and I know what its like when people try and give you advice. Sometimes you would rather them just have keep it to themselves!:lol:

Sorry you had to deal that. :group:

[Tammy in Texas]

OK - am I off base here? Does this seem inappropriate to anyone else? Is this really a product that is going to change my daughter? Anyone ever heard of it? (I can't imagine that it can undo something that is genetically encoded into every cell of her body.)

{{{Leslie}}} No, you're not off base. Yes, it does seem inappropriate. And, for the reason you stated at the end, I tend to doubt the claims as well. If it sounds too good to be true, it probably is.

[Oney]

:group:

[laurie in ok]

Oh, Leslie, I'm so sorry! It was rude and insensitive! I have heard good things about mannatech - but not the kind of cures that this lady is talking about. I've never tried it b/c it is EXPENSIVE! In all honesty, I think this woman really believes in her product. She probably has been pumped full of these "amazing" stories and feels that she would be withholding these amazing cures from you if she didn't share. I don't know this lady, but I would try to give her the benefit that she was truly concerned about helping Eliana and not trying to make money off you.

[Hollie in SC]

Leslie,

I'm sorry. :group: There are multiple companies out there preying on parents with promises that they can "cure" or "fix" our kids. :angry:

It was inappropriate whether her intentions were good or bad. However, I do hope her intentions were the best.

More than anything, though, I'm sorry that you were hurt. Your life is already overflowing with challenges and hurt right now. :group:

Much love to you, my friend. :group:

[shonda in ca]

:group:

I must say, the ladies that have responded with such grace are much better than I. :perplex: I am really irritated with that woman!

I think I would contact the person that does the bulletin and want them to put a disclaimer at the bottom: Not for solicitation!

We have a church phone directory and it very clearly says For Church Use Only, not for solicitation.

I'm sorry, Leslie! Try to blow her off. :group:

[SarahLynn]

Leslie,

I also have a dd with DS (my 4yo). Right after Hannah was born, I had several people approach me at different times (at the pool during swimming lessons, church, the grocery store, etc.) and these "well-meaning" people would make comments about how they had heard that this or that vitamin/supplement/whatever helped to change the looks of kids with DS.

:eek: and :sad: and :unsure: was my reaction to each one.

I just politely said I was quite okay with the way my dd looked. And then I moved away or walked away. And privately fumed. And prayed.

This happened one more time just about 6 months ago when my oldest dd's piano teacher gave me the same speech as that lady gave you, Leslie. We do use Mannatech and have for a long time but I'm under no delusion that it'll change the way Hannah looks or that it'll even help her intelligence. We take it to support our health.

After the piano teacher handed me the Mannatech brochure with that lovely young lady with DS in it, I handed it back (I got one from somebody else a long while before and had already read it) and told her politely that there was no way to connect her looks with Mannatech (after all, the "before" picture of her was taken when she was younger and HELLO! All children's looks change as they grow!!!) And secondly, why was she assumming I'd want to change Hannah's looks anyway? From the look on her face, I could tell she realized it was HER issue, not mine, about the way our sweet Hannah looks.

I feel very sorry for that family making such a big deal out of how Mannatech "changed" the girl's looks. Me thinks they have their priorities all muddled.

I'm sorry you had to experience this kind of thing too, Leslie. And no, I don't think you were/are too sensitive.

Blessings,

[debbie in ak]

You are not off base....I am so sorry that this happened!:group:

[Kathy White]

:group:

I must say, the ladies that have responded with such grace are much better than I. :perplex: I am really irritated with that woman!

I think I would contact the person that does the bulletin and want them to put a disclaimer at the bottom: Not for solicitation!

We have a church phone directory and it very clearly says For Church Use Only, not for solicitation.

I'm sorry, Leslie! Try to blow her off. :group:

Me too! I agree with Shonda. This lady needs to be reigned in by someone in authority. She stepped way over her bounds -good intentions or not. I am so sorry that happened. :group:

[JennyO]

Yup! Been there:unsure: Actually, one of my friends from church was really pushing it at me for a while. I did look into it, just to see what all of the hype was about. Then my sister started suggesting it to us for our special needs daughter. She asked me if her friends, who sells Mannatech, Glyco-nutrients could send me literature on it and a DVD. I said "okay" and even watched the DVD. Then we decided that when my dh took our daughter to see a very good alternative medicine doctor from our State's University hospital, that we would ask her about it as well. Her advice was, "no":no: There has been no long term study done on the product and it's not approved by the FDA. I know that many things approved by the FDA aren't always safe anyway! But, this particular doctor we talked to said she would in no way recommend it to people right now, with so little known about it.

To me it really comes off as a "wonder" drug, actually it's not a drug...it's a supplement...isn't it? I don't know...maybe 10 years down the road we'll all find out that it is really good. But, who's to say now. We won't be using it with our daughter. It kind of irked me a bit too that just because my daughter has special needs I was kind of targeted by my sister's friend. She of course wanted us to order through her if we decided to go with it. And we could never afford it either. Anyway...I would be irritated too. People do some strange and insensitive things sometimes:unsure:

[Barb Cash]

:group: I am so sorry, sweet friend! Eliana is, in deed, just the way God made her and that's what makes her special ~ to you and us! :group:

Much love to you,

[normafl]

OH Leslie I would feel angry also! Your not off base! Goodness what must people be thinking. Norma

[Jill S]

Where's the head exploding smilie? You are much nicer than I would be, although that probably goes without saying. Perhaps she meant to be nice and would be very surprised that you weren't thrilled about this product, but I don't think you would be wrong to tell her (if she calls back) that you and Roger have clearly decided that you trust Eliana's nutritional needs are being properly evaluated by her doctors and that it would cause you more worry to go against their good advice, particularly during this time leading up to her heart surgery.

Hollie is right (although that probably also goes without saying ;) ) about there being many companies who prey on the insecurities of parents of differently abled children. I appreciate your attitude that Eliana's beautiful looks are exactly as God designed (and she is so darling in her pictures). Like most anything else involving our children, we must ask God for discernment in doing the right thing, whether it's finding the right curriculum (FIAR, of course) or using a nutritional supplement.

My applause to you for showing Christian kindness during a period of sleep-deprivation--that's an inspiration to me, for sure!
:group:

[Julie Y]

I'm sorry you had to deal with that. Our pastor's wife has cancer. Whenever he mentions it from the pulpit, to update us on how she's doing, he says, "Since everyone always asks ... this is what you can do for us. We appreciate your prayers and your notes of encouragement. We do NOT want to hear about a book to read, a doctor to try, or a supplement to buy."

[carriejoy]

I have mixed feelings on this Leslie. I do think the gal was probably sincere. And truthfully, when we find something we think is fantastic and will help someone we honestly desire to spread it. Whether it's a great dentist, toilet paper on sale or a supplement that makes us feel great.

I don't know about mannatech. I do know some about Reliv (not a distributor!!). Reliv helped us get my husband's horrible diabetes under control without going on insulin and it help him to lose about 30 lbs too.

So, here's my 2 cents worth. Right now is a really hard and busy time for your family. If you have it in you to do any research on supplements that help brain development etc, then do it. Then compare it to the mannatech. God forbid this really is a great product that could make a great difference in Eliana's life and due to the presentation you never know. But if you can make an informed decision, that makes all the difference and helps to take the emotion out of it.

Most of these products ARE really expensive. Direct sales are not easy. Eliana is *small* right now and wouldn't use the same amount of product anyway. If your budget doesn't allow for it, don't worry. God still knows what you need. If this idea of supplementing just won't leave you in peace, maybe that's God's leading. If it does leave you and you have peace, then maybe that's God's closing of the door for now.

I hope this helps a little. I think that you're going to be hypersensative for a long time (not saying that you are in THIS case). You're forever going to get people to find things for you to try. If you get your education done sooner, rather than later, you'll be more equipped to evaluate what is being offered too.

Blessings to you and your sweet girl and family!

[Merrilee Morse]

A dear friend of mine once had a picture of a DS child in a swimming pool posted on her fridge. I asked her if that was her son Richie (who has DS) and she said no, it was just a picture from the newspaper and she had cut it out because it looked just like Richie. Then she commented, "There is a strange sameness to DS kids faces, it is almost like they all have the same father." My response was, "Bev, they all DO." Your daughter is beautiful just the way God made her, and I think that if there were a "cure" it would be big news. I would just quietly ignore the woman, which is better than she probably deserves.

[Ronette in CA]

:group: You are not over reacting.:angry:

Eliana is gorgeous! As a "heart mom," I wouldn't give my baby anything not approved by her cardiologist.

Her actions were in very poor taste even if she was sincere.

[Sarah in SC]

Well, I'll go ahead and pitch the big mad fit for you!!

:angry: :angry: :angry: :mad: :mad: :mad1: :mad1:

I think this was TOTALLY out of line, and I don't care what her intentions were....it's not like she was calling to offer something to you for FREE that might be of help to you. It was a SALES CALL, and that's pathetic.

Your precious baby girl is BEAUTIFUL-- breathtaking, in fact. I think of her beautiful sweet smiling face so often.

I'm just so sorry that you had to endure that phone call, Leslie....it makes me hopping mad.

[Robin(CA)]

RUDE! :angry:
Some people. . .
:group:

[Trish A]

I don't even have words...well I do, but none that I could speak out loud. :mad:

Eliana is so precious:kiss: ...how could anyone not see that?!

[Alice R]

:eek: VERY RUDE AND INSENSTIVE. :eek:

I know this woman probably had good intentions but the road to hell is paved with good intentions.


I would be highly offended if someone said that to me and my child.

I think I would write the woman a note and let her know how you feel. I would not speak to her because your emotions would get the best of you. However, a carefully worded note would be a real eye opener for her. ESpcially since this woman is a Christian. I'm sure she is completely unaware of how offensive and ignorant she sounds. How hurtful to say to a parent that their child's little face needs to be fixed. If you gave me her number, I'd call her for you. Nothing would give me more pleasure. :D

My MIL called me (years and years ago) to ask me what she did wrong. Check this out: A nurse at the hosptial where she worked had a little baby with down syndrome. My MIL offers the woman HER CONDOLENCES!!!! :eek: :eek: With the baby in the mother's arms (brought the baby to work to show everyone!). The woman pretty much told my MIL what to do with that comment. :mad: My MIL was stunned. She called me (since I work with special needs children) and I told her what she said was horrible and WHY it was horrible. She felt bad and sent the woman an apology card. Now, when it comes to babies with special needs, she smiles and says nothing. She learned. I'm glad that woman set her straight. Sometimes people need to be told how rude they are.


As Julie pointed out, when my mother had cancer, some "person" would always comment on how this essential oil or this organic diet or blah blah would cure her. Hello??? Anyone home???? Like the guy in the parking lot has the cure to cancer? It REALLY bugged my mother. Like we were morons...

Anyway, I'd send her a note and explain that her call was inappropriate.

I'm sorry someone said something so unkind about Eliana. You really didn't need that aggrevation.

[Tami in FL]

Leslie,

I know just how you feel! That women you talk about could be my mother! She can cure cancer, alzheimer's and high blood pressure. Of course I have had high blood for 3 years and she hasn't been able to help me! Now she has something different for me to do and she is begging me to do this. She states please help me to get you well!
The last time I went to the dr. and still have hbp and now I have a murmur,but I should just listen to her!! She is driving me crazy!!! I am going to have a heart attack just listening to her! You are not the crazy one believe me!!!

[Caroline in FL]

Leslie,

People, people, people and what comes out of their mouths! I think it was very insensitive.

As others have stated, this woman probably is trying to "help" and she has been brainwashed into thinking that this product is the answer. My MIL did the same thing with the product Reliv. She was relentless that it cured just about any ailment you could think of. When my niece was put in the hospital for RSV, she told my SIL she should have been putting it in her bottle like she had been telling her to do. I was pretty upset about that!!! Looking back, I truly feel my MIL meant well with her many phone calls and shipments of Reliv. She had listened to testimonial after testimonial of how it would cure everything and keep you healthy forever. She was even giving it to her dog. :eek: For her, it wasn't the money she wanted (she was GIVING it to us), she truly believed it was a miracle cure. I'm saying all this so you know how passionate some people become about their products. Don't even get me started about Amway. By the way, I do feel Reliv and Amway have goodproducts in their own rite, but I don't agree with their selling practices.

Oh well, I'm talking to much here, but I definitely wanted to say that Eliana is beautiful and she IS who God designed her to be and she is blessed with a wonderful mother!!!

Caroline :kiss:

[Amanda]

Well, I think that she probably does really believe it could help, and she's probably very enthusiastic about her product, so I do hope you can just forgive.

But I would be extremely irked myself and if I were the one in the situation it would probably take me a while to talk myself down. If she had approached me and told me that she saw the info in the bulletin, told me FIRST that she was a rep and had a product that she had seen to be beneficial in similar situations, and then just left me a card, well, that would go over a lot better with me.

:yes: I agree

[Loralin]

Yes, I've had the same thing happen with my kids. They have Cystic Fibrosis. I have been given articles, calls videos, even a box of free supplies! They made me feel guilty if I didn't try it, but would not let me know what dosage the kids would need. Then they implied that I should take them off all their medications and just try it! As if I would make my children a guinea pig!!!! ::mad1: The children's pulmologist would not approve the stuff, and said there wasn't any medical basis for their claims.

Grrrr... it does sound like the same if not exact spiel they gave me.... Grrr....

Eliana is a precious gift from God. :kiss:

[Lynn,NC]

I think it was very inappropriate of her. I really do. Shouldn't this woman have some fear regarding "prescribing" something to a tiny precious new baby with a medical condition?

And Eliana is already beautiful. :) She does not need a glyco anything to change her looks.

Sigh. We have to be so careful with our words and actions and our motives. Even if there was a vein in her actions that was pure and wanting to help, seems there was a river of self-promotion. I don't mean that to sound like a judgment--it's not. What you have told us is a reminder to me of how careful I need to be about my OWN words and actions and motives.

If you treat her with kindness, you'll be doing the right thing. I don't see one thing wrong, though, with gently stating that the publication of your situation was for prayers, and that you would not consider giving something to Eliana internally that her doctors know nothing about. Just my 2 cents.

:group:
Lynn

[SoniaM]

Its Glyconutrients
we have used them
we also had a pushing salesman that was a christian
I had an allegic reaction to one of there products
we had good results with the son we tried on them but the are expensive
i looked into glyconutrients here is some info for you


Read thru here you will see the foods that you can eat(sure they are not concentrated like Mannatechs products but he much cheaper(they have a recipe for the powder on this site you can make yourself) so you can let the lady know you have found a cheaper source and thanks for her prays cause God has answered them:)
http://www.alkalizeforhealth.net/nutritionalsupplements.htm

I also wanted to add in regards to children with higher/special needs
People assume something is wrong when they don't look or behave a certain way--you know the "normal way" the world thinks something has gone wrong with there chromosomes-- how can they be certain? maybe GOD knows exactly what he is doing(don't get me wrong i know that children with High/Special needs Require something extra in areas of there lives) but maybe that is Exactly what GOD wants for them Mumma & Dadda ..

[Caroline in FL]

Then she commented, "There is a strange sameness to DS kids faces, it is almost like they all have the same father." My response was, "Bev, they all DO."

I love this!!!

[Nakia]

Oh sweet Leslie. I totally agree with all the ladies who said you are not being oversensitive. I think you handled it very gracefully. I probably would've said something that I would have had to ask forgiveness for later. But I have never been one to hold back. Anyway...I completely agree with SarahLynn. This is HER issue, not yours. Try to just let it go and not waste another minute thinking about it. We all know Eliana is an angel! Those eyes and that hair are enough to make me crazy! She is just gorgeous. I can just picture that sweet smile. Can you tell I love babies?!?!

[Stacy in OR]

Leslie,

I am so sorry for the insensitivity of this woman. Only God knows what motivates her. I do know that some people who have seen miraculous changes in themselves or people they love after taking this supplement are extremely eager to share the news with others. I was a "victim" of such an enthusiastic person just two weeks ago :).

I have a friend who has a 10 yo boy with down syndrome. He also has a severe gluten allergy. Since birth, he has been taking a very expensive vitamin especially formulated for DS children. At times, my friend would run out of the vitamin and have to wait before she could order more. It was during this time that she noticed her sons complexion cleared up. (He had terrible rashes on his face due to allergic reations). She realized that the vitamins were causing this even though they were not manufactured with gluten. Anyway, someone told her all about this Mannatech product. Yes, they even told her that her son would lose his DS appearance which made her sad because, afterall, God created her son the way he is. Of course, she was very skeptical of this "snake oil", but was also willing to give it a try. She did try the vitamins and for the first time, her son has had a clear complexion and has decreased the frequency of wetting his pants. He has also had improved behavior. (I don't know what she meant by this - better attention span, less hyper, ???)

I don't know why I shared all of this, but to let you know that it is possible that even though this woman didn't seem to approach you in a very thoughtful manner, that some people have seen some terrific results with this product, and she might have been motivated by good intentions (oh, boy, I really do sound like my mother here-always giving others the benefit of the doubt:eek:). I also wanted to let you know that you are not alone as in the case of my dear friend who has people wanting to "help" her son. As much as it hurts, please try not to take it personally. Your daughter is precious just the way she is!!

By the way, I really love the name you chose for her!! We have an Eliana too. I'm guessing you chose her name for the meaning - we did!!

[Leslie Nelsen]

Thank you! Thank you for understanding why this hurt and why this was offensive. Thank you for being angry for me. I know that I'm raw on a number of fronts and don't want to completely lose my perspective - or maybe I just need a new one. I appreciate ya'll standing with me.

I do think she was just excited about her product and the amazing stories that she has heard. Though honestly, the "push" to make sure she got credit (said more than once) if I bought it after attending the presentation was just too much. It was a sales call. :( (Though I think in her mind it was a call to help.)

I just don't have time to look into this now. I'm overwhelmed with just trying to manage my life right now. Between caring for Eliana and pumping - the rest goes to helping/spending time with my other children, caring for the house, schooling, etc. I don't want to miss something if it's something she needs but honestly couldn't in good conscience give something to a baby in heart failure anyway. I did ask my ped about supplements awhile back and she said "no". She is on the conservative side of things I know, but I do trust her.

I think the idea of letting her know that her comments were rude and insensitive is a good one. Mainly so that she doesn't do this to someone else.

What a sad world we live in. Alice, I have received two cards that seemed like condolences. They were both from older people - a generation that "put children like this away". :( They both came shortly after Eliana was born. No congratulations - just I'm sorry and I'm praying. :cry: Again, I tried to excuse them knowing that they meant well. I guess this is something I'm going to have to endure more and more. I don't know that it will ever be easy. Right now she is soooo very cute and doesn't seem so "different" though it will be more noticable as she ages I'm sure. She is just who God made her to be. Her smile just delights me to the core. :hcry: She is truly a precious gift!


By the way, I really love the name you chose for her!! We have an Eliana too. I'm guessing you chose her name for the meaning - we did!!

You know this name was one I "stumbled" on later in my pregnancy. I liked it and the meaning even though it wasn't the girl name that I've had picked out for years! When Eliana was born, the name that I had saved for years just didn't seem right for her. I know that it means "my God has answered". I'd love to hear more about why you chose the name. I'm not sure for us "what" God has answered and know that more of that will be revealed to me/us as time goes on. I know that He answered my prayers for another precious child.

Thank you friends. I don't want to be someone that is so easily offended that I'm difficult to be around or that people are afraid to talk to me. I'm sleep deprived and emotionally worn out and know that can easily affect my judgment. Thank you for letting me know that I'm not off base here.

I appreciate your encouragment more than I can express. I read your responses over and over as it is sweet balm to my spirit.

Hugs to all of you! :group:

[laurie in ok]

I hope I didn't sound like I was saying you shouldn't have been mad - b/c you definitely had every right! I would have been so ticked!

[Leslie Nelsen]

I hope I didn't sound like I was saying you shouldn't have been mad - b/c you definitely had every right! I would have been so ticked!

Oh sweet friend, you didn't!!! :group: Your post was very sweet!

I do believe that she was approaching me with good intentions - she just must have no understanding at all of how it comes across to a mom when someone tells of a product that might "fix" the her baby looks. :(

[Nancy Ann]

My husband and I had lots of experiences similar to this when our son was dying of cancer. We had people approach us with herbal remedies, special surgery techniques ect.. I even had someone say they were a christian Shaman and ask to do some sort of ritual prayer thing, I was a little concerned it sounded like voo doo and so I politely declined. It was frustrating and difficult at times, I also was more sensitive at that time, things effected me more and I could cry at the drop of a hat and get angry over small things. But this was normal for what we were going through.

I determined that these people mean well and I just needed to pray for strength and to show people grace. I would much rather have people interested than not at all. We had several people that were very close to us during this awful time completely ignore us! Looking back I am very appreciative of all the time and interest people showed us.

This medicine may very well be good for your daughter, but just be warned you will probably get lots of people coming up to you with new and innovative ideas. I think it would be wise to spend time in prayer so that God will help you to discern between what is good for your precious daughter and what is just a bunch of hooey! My husband and I spent much time in prayer over our sons medical docotors (onocologist and radiation dr) We truly felt that if God was going to save our son it would be through them. He had wonderful and knowledgble doctors who were up on all the new treatments. I absolutely don't think it's possible for you to EVER miss a treatment that God wants you to have to help your daughter. God doesn't work like that, He doesn't manipulate us like that. I am only saying this because I was very fearful that the life of my son rested in how much research I did! I thought if I didn't do research on every single thing that was introduced to me I may miss a chance for God to cure him. Eventually I found peace knowing that God is in control and He will give our family what we need. That is when I relied on our medical doctors and prayed for them and took advice from them.

I think it is nice this lady wants to help and though she sells the product and maybe came across pushy, I believe her prayers and attention were honest and heartfelt. It is also understandble that this situation irked you, it would have me as well. Things are very complicated for you right now and you can be irked and appreciative at the same time! :)

[Sharon C]

:group: Leslie, the woman was rude and insensitive, and she probably did mean well, but was also trying to make a sale(which there is nothing wrong with in and of itself) but to continue to say, "use my ID so I'll get credit" and that her face will look "normal" or whatever! HOW RUDE!


So, I personally would report this to the powers that be at church, or wherever. Or go ahead and write her the note of how this really hurt you and that it is annoying, when you post for prayer that someone does this.

I agree with another poster who said, that if the woman had just said, I do know of a product that may help your daughter, if you are interested I'll send you a brochure, either way I would love to pray for you." (not that I'll pray you get the product, that really irked me!!!):angry:

I have 2 people close to me with DS children, and even though they may be "different" according to the worlds standards, I have found them to be more sweet and loving than any children I know of. I know it will be a lot for your family, because of some of the physical problems, and extra things you need to do, but I know you are strong and will be able to get through with God's help, and you will be blessed beyond measure.

Eliana is a beautiful little girl, and is very blessed to have you as a mommy. She was born into a family that will give her love and support.

[DD in IL]

I was okay with the information until you got to the part of "mention" my name. I think that if it is a great product and she was letting you know out of concern and if you went they would probably ask how you heard about it, etc. As far as looks, God looks on the inside and not the outside and so should we. Trying to sell me a product to help my child fine, but to pushthe products success based on looks.........I would check out the product based on some of the things mentioned in other posts if it would help your little one but I don't think I would give a name.

[Leslie Nelsen]

Thank you all. I guess I was hoping to just forget about it ... but she keeps calling and calling! *sigh* I am not sure I am ready to handle this verbally and just haven't had the time to write a note. (Though honestly haven't wanted to spend energy doing that either.)

She has called at least twice today and once each yesterday and the day before. Gotta like having caller id!

I appreciate your feedback to address this with her. I do think that is the right thing to do, though I had hoped to not have to do it right now. We are meeting with one of our pastors tonight and I've thought about sharing it with him. I don't want to be a gossip but don't want others to have to be hurt in this manner either. :(

Honestly, I just don't want to deal with it at all.

[Ronette in CA]

Oh my! OK, now I'm sure we're all :angry:! I think we could all give the benefit of the doubt for the first call but this is totally inexusable on her part!

I think I would bring it up to the pastor and possibly ask him to handle it for you as you're just not strong enough to do it right now. He should know that the church directory is being used for marketing and it should be addressed.

I'm really upset for you, Leslie!:group:

[shonda in ca]

Oh Leslie!! Please have your pastor handle this! :( That is RIDICULOUS!!! :angry:

I'm sure any one of us would also be willing to call her for you! :yes:

With much love,

[Hollie in SC]

Oh Leslie!! Please have your pastor handle this! :( That is RIDICULOUS!!! :angry:

I'm sure any one of us would also be willing to call her for you! :yes:

With much love,


:yes: I'm so sorry. Thrilled you have the caller ID, though. Whew....

[Sheri]

Oh my goodness Leslie! I am so sorry she keeps calling! I would imagine that just adds unbelievable stress to your day!!

[Merrilee Morse]

Our church directory says right on it that it is NOT to be used for sales or marketing. Yours should adopt the same policy, it seems. I agree...telling the pastor is NOT gossip. This woman is way out of line!

[Sarah]

Oh Leslie!! Please have your pastor handle this! :( That is RIDICULOUS!!! :angry:

I'm sure any one of us would also be willing to call her for you! :yes:

With much love,

I agree Leslie, I haven't read any of your post except for your last 2 prayer request and I read this thread today. I am so sorry for what you are going through and my prayers are with you and your sweet little girl.
My Sophie was just diagnosed with Autism right before Christmas, and I had my MIL say some really insensitive things that really upset me. Luckily she said them to my dh and not to me directly so I fell apart in private and I didn't respond to her in anger or hurt. I know she didn't mean harm and I have not discussed them with her. If they were said to me directely it probably would be a different story. I am a very easy going person and I am very slow to anger, but this time in my life I am very voneralble. I am just trying to keep it together. You did a great job handling this! :clap:
I am using some diets and supplements to help my Sophie, and I getting some results from them which I am THRILLED about! I felt led to this by God and not pushed by a salesperson.

[Leslie Nelsen]

Some of this is probably my fault. When we talked the first time I was in a bit of shock and needing to process what she said. I think some of it was just a little unbelievable at the time. She did ask if she could call again. I stupidly said "yes" as I was trying to be polite. After processing the call, I truly don't want to talk with her again.

I'm not sure what was going through my mind at the time. It was so out of left field and I was really caught off guard. I guess when I said yes I didn't think she would be hounding me either!

Just didn't want to paint her as completely at fault here. I appreciate your indignation on my behalf though. :group: I do think I'll tell our pastor tonight too. He's a very gentle man and I trust him with regards to helping me deal with this.

Sarah - I'm sorry you are having to deal with the weight of the dx for your precious daughter and insensitive comments too. :group: Sometimes those close to us feel comfortable saying things that should probably not be stated. I know I've experienced that too and it really, really hurts. :cry:

Thanks to all of you!

[Lisalyn]

Leslie! :mad: :mad:

You know, if she had left out the part about using her name, I could give her the benefit of the doubt.

The fact that she is involved in this company makes this very insensitive!

If she was a friend of a customer or some relative had raved about it, that would be different.

But praying that you would be swayed?!?!?!

I'm so sorry. :sad:

[BeckyOK]

This MUST be a miracle supplement because I got a call and cd encouraging me to use it to straighten my daughters scoliosis and brain malformation. Imagine something that seems to cure a multitude of conditions........

i passed.

[carriejoy]

Ok Leslie,

Here is a "sample" letter/note/script you can use. I tried to be gentle and straightforward. Copy and paste into a word document (or if she has an email copy and paste into your email and send!). Delete or add as needed. Hope this helps you a bit. You can "rehearse" it so when she calls you have something to say. Or your husband. ;) He can't be enjoying seeing you in such a muddle over something so silly.

Blessings, carriejoy

Dear Mannatech-Lady,

I appreciate that you think of my daughter's well being. Unfortunately the way you are going about it is incredibly hurtful. I am sure you have no idea that this is actually adding to our stress and not helping.

Eliana is precious to us. We want to do everything in our power to do the right thing for her, just as we would for any of our children. You probably didn't mean for the comment about facial features to be hurtful, but it was. When I look at her I am so filled with joy. She has the most beautiful smile. GOD KNIT HER TOGETHER IN THE WOMB. Who am I to complain or hope for "improvements"?

I have spoken briefly to our doctor and he is not comfortable adding anything to Eliana's diet. I'm sure you understand that with the stress and pressure we have, we are much more comfortable with the doctor who has been with us through all so far.

Right now my emotions are running very high. Things that might not have offended in the past do offend now. My mind is very very full and I do not have the mental energy to process the information you're trying to give me. I realize I said "yes" when you asked if you could call again. I just didn't realize what I was saying. I'd really appreciate your prayerful support of our family and daughter. If we decide to go the supplement route, I may contact you. In the meantime it would show me great respect if you were to leave us alone in this department.

Thank you for your understanding and continued friendship.

Sincerely,
Leslie

[Barb Cash]

I would be happy to write to this lady for you if that would help, Les! Just let me know! :group:

[ShaunaCO]

Thank you all. I guess I was hoping to just forget about it ... but she keeps calling and calling! *sigh* I am not sure I am ready to handle this verbally and just haven't had the time to write a note. (Though honestly haven't wanted to spend energy doing that either.)

She has called at least twice today and once each yesterday and the day before. Gotta like having caller id!

I appreciate your feedback to address this with her. I do think that is the right thing to do, though I had hoped to not have to do it right now. We are meeting with one of our pastors tonight and I've thought about sharing it with him. I don't want to be a gossip but don't want others to have to be hurt in this manner either. :(

Honestly, I just don't want to deal with it at all.


:mad: I don't think you should have to deal with it a moment longer! This is unbelievable! I don't think it would be gossiping at all to share it with your pastor, and it would be good if he or someone else from the church would speak to her about using the bulletin for this purpose and about being insensitive. Could you just not pick up the phone when she calls or have your DH talk to her instead?

[Linda]

I would be happy to write to this lady for you if that would help, Les! Just let me know! :group:

I was thinking the same thing. You do not need this now and I would be more than happy to politely tell this lady to not bother you anymore about this product.

[Alana]

I hope your pastor was very helpful. You are obviously very Christlike. You are a wonderful example to me.

Bless you and your sweetie! (who is perfect, just the way God made her)

[Celia]

OK - am I off base here? Does this seem inappropriate to anyone else? Is this really a product that is going to change my daughter? Anyone ever heard of it? (I can't imagine that it can undo something that is genetically encoded into every cell of her body.)

Please be gentle with me if I'm being too sensitive here.

Thanks,

Hi Leslie,

First off, I've not read many of the responses. When I first came down with dermatomyositis, I had a similar--though not so pushy--experience. One of our moms in the local homeschool support group was like "You might want to give MannaTech products a try. My ??father?brother? someone?? had cancer and started taking it and now he doesn't have it anymore!! And my kids have only been sick a couple times since we started it a couple years ago."

I did start taking it, after doing a bit of research on the nutrients. However, I've not been miracuously cured, nor did I expect to be. I use it because after researching it, I decided I wanted to put something healthy in my body to counteract the nasty drugs I'm taking. I felt like I'd lost control of my life and my body, and this was something I could do to still have some control.

There are many stories of miraculous cures using MannaTech, but I believe only God can do a miraculous healing in our bodies (and if He so chooses, He could use MannaTech products to do it).

I do continue to take use MannaTech products today, though I did quit during a 3 or 4 month period late last year. But I seemed to feel better when I was taking it, so I started back up a couple months ago. I liken it to taking a good (but too expensive!) multivitamin.

I'm sorry this lady keeps calling. I can't imagine hounding anyone like she did.

My friend truly wasn't pushy about it, she was just enthusiastic about her personal experience. I too am officially a rep with the company because I can get it at a slight discount....but I don't sell to anyone but myself.

Anyway, I can really only offer you hugs and prayers. I pray she'll see that this is not helping at all. Give some snuggles to beautiful, sweet Eliana......and I agree, she is perfect the way she is!

:group:

[Leslie Nelsen]

Thank you! I wanted to post a bit of an update.

I did tell our pastor last night and he was very concerned and upset that this had happened. He did say that he would handle it for me. I told him that I thought it good for me to send her a note. I want her to know how her comments affected me. How hurtful and insensitive it was to approach me to sell something to "fix" my daughter. :angry: I don't want this to happen to someone else. It's more than just the inappropriateness of using the prayer request in the bulletin as an opportunity to make a sales call. It's the whole attitude toward someone that is different. :(

After thinking about it more though, I'm really not sure I have it in me to even do that. Our pastor did want me to follow up with him as to what happened and how she responded. I think I'm just going to call him and let him handle it.

I appreciate your offers to help me - and may take you up on it if I have the energy. It's just one more thing to deal with - and not the big one on the plate right now.

She called again today and mentioned that she was going to try to email me too. Great, now I can be hounded via 2 mediums. She clearly isn't going to stop without intervention.

ETA: I received a link to article from a friend about this. An interesting bit in there stated that sales associates making false claims like this should be reported. I don't think I would do that, though I will share that information with her too. (Or ask my pastor to do it.) The article also said it was not recommended for children with DS.

Such a sad, sad world that my sweet little daughter is viewed like this. :cry: Thank you to all of you for loving her - and the way she looks. It means so very much to me. :group:

With love,