Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Daughter Said Something Really Neat Today!


gf4life

Recommended Posts

gf4life Enthusiast

Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



nettiebeads Apprentice

Sounds like you're doing a fine job, mom!!!

Lisa Mentor

ditto, what a wonderful joy you must be doing. :)

2kids4me Contributor

and another "good job" to you.

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

With young children, the way my friend explains it to kids (her son has CP) is:

His brain cant send alot of messages to his muscles so they kinda do whatever they want. But his eyes work great and so does his sense of humour and he loves to visit with other kids and hear about you (he is non verbal).

Lisa Mentor
ditto, what a wonderful joy you must be doing. :)

I meant "job", but "joy" can work as well. :)

tiffjake Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

That is so cool! I think kids are so open to things, and adults put limits on them that they don't see or feel so they get confused. But I don't have kids, LOL, so this is just my opinion based on babysitting and my friends' kids. Looks like you aren't teaching your daughter that gluten-free food is bad, and that is cool!

taz sharratt Enthusiast
Today my 7yo daughter and I were talking about her new friend. Her friend has Cerebral Palsy and she uses a walker to help her get around. They are in a stretching class together at our local dance studio and my daughter says that her friend enjoys the class, but she falls down a lot. I explained to her that her friend has a disease that causes her muscles not to work too well. (That is about as detailed as I wanted to get into it with her without doing more research to explain it better...)

So she asked me, "Will she get better or will she always be like that". I told her that she will always have the disease, but there are doctors and scientists looking for ways to cure it. Then I said, it is sort of how you will never be able to eat gluten, unless they come up with a way of your body being able to tolerate it. So here is the kicker! She says to me, "I wouldn't want to eat gluten even if I could. The gluten free food tastes so much better!" And I swear she was serious! :D

She doesn't mind being different. We went to a party today for the summer reading club at our local library. My daughter was happy when they brought out the snacks. They had ice creams bars and cookies. She got to have 2 ice cream bars since she couldn't eat the cookies. It wasn't as if she were suffering or anything! ;) And at vacation bible school last week all the kids were jealous of my kids because mine got a full sized homemade gluten-free cupcake and the rest of the kids got a store bought mini cupcake.

you should be really proud of your daughter sounds like she has a good head on her shoulders.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

This is why I always told my kids things. I was told not to tell them when things were bad or someone was sick, it would put too much stress on the kids. I think that it eased their stress, simply because they knew what was going on. Your child showed just how much a child can comprehend and relate to things that are not good, and therefore be accepting. You should be proud of your daughter! Thank you for sharing it with us!

gf4life Enthusiast

Thanks everyone. I am really proud of her. :D She is very wise for her age!

You may want to rephrase the definition when she is older perhaps. Cerebral palsy is not a disease but it is brain damage to the motor area of the brain. People with Cerebral palsy often have normal intelligence but speech is altered (in severe damage, they are non verbal). The muscles are fine - they just dont get the right messages for co-ordinated movement.

It most often occurs at birth (hypoxia, umbilical cord being entrapped by the baby's shoulder, or wrapped around baby's neck). It can also occurs if the baby requires surgery in the neonatal period and 02 is compromised during the procerdure - heart surgery, closing a defect from spina bifida etc.. The motor area is the first one damaged when oxygen supply is compromised (this was how the neuro guy explained to my friend)

I do plan to explain this more as she gets older. Thank you for the explanation. The amazing thing about this little girl with CP is that she lived for the first year of her life in an orphanage in Kazackstan, and she pretty much just stayed in her crib all day with no stimulation or interaction with others. Her adoptive parents were told that she would never walk or talk (in any language), but she is doing both! She can walk unassisted for short distances, but mostly uses a walker, and she can speak english as well as any other 6 year old. Her parents are amazing, too. They are in the process of adopting another child, possibly from the same area.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,989
    • Most Online (within 30 mins)
      7,748

    CharlotteCaroline
    Newest Member
    CharlotteCaroline
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      Testing can't alone be trusted.  Else why would it take so many years of testing and retesting and misdiagnosis to finally be told, yes you have Celiac Disease. As to what to eat, I like pre 1950 style food.  Before the advent of TV dinners.  Fresh food is better for you, and cooking from scratch is cheaper.  Watch Rachel Ray's 30 Minute Meals for how to cook.  Keep in mind that she is not gluten free, but her techniques are awesome.  Just use something else instead of wheat, barley, rye. Dr Fuhrman is a ex cardiologist.  His book Eat to Live and Dr Davis' book Wheatbelly were instrumental in my survival.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.