Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Cerebral Palsy


wowzer

Recommended Posts

wowzer Community Regular

Hello, My daughter called today about her youngest daughter. She was born at 37 weeks weighing 4 pounds 7 ounces. My daughter did have an emergency C section because the baby was in distress. She is now 8 months old. She only weights a little over 12 pounds and has only gained a little over a pound in the last 2 months. She is a big eater. My daughter wonders where it all goes even. She is doing the army crawl now. It is something to do with her legs because she crosses them and also has a hard time sitting. She has been referred to an endocronologist, so we have to wait and see how that goes. Her pediatrician did say if she has it, it is a mild case. Does anyone know anything about this?


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



Celiac.com Sponsor (A8-M):



celiac-mommy Collaborator
Hello, My daughter called today about her youngest daughter. She was born at 37 weeks weighing 4 pounds 7 ounces. My daughter did have an emergency C section because the baby was in distress. She is now 8 months old. She only weights a little over 12 pounds and has only gained a little over a pound in the last 2 months. She is a big eater. My daughter wonders where it all goes even. She is doing the army crawl now. It is something to do with her legs because she crosses them and also has a hard time sitting. She has been referred to an endocronologist, so we have to wait and see how that goes. Her pediatrician did say if she has it, it is a mild case. Does anyone know anything about this?

My SIL was born at 27 weeks, has a mild form. My boss's daughter was born at 26 weeks, also has a mild form. The big thing that I have learned from watching both of these girls grow up is to treat them like a normal child. Recognize any difficulties/limitations they have, but DON"T cater to their every need, teach them to be self sufficient, and treat them as though they CAN do ANYTHING. My inlaws didn't know how to deal with a "special needs" child, and although she was fully capable of doing many things a normal child could do, they did everything for her. She's now in her mid-20's and is just now living on her own. She's got the maturity level of a 12 year old and she still has to be reminded to brush her teeth, hair, shower regularly and she lives comp;tely on cup-o-noodle. It's rediculous--and they totally regret how they dealt with her growing up! My boss's daughter is a normal 13 year old with some physical abnormalities, but she does well in school and play sports. They do recogize her limitations, but they treat her as though she's "normal" I know there are varying degrees of CP severity, in my 'medical' opinion, these 2 girls are of the same severity. I hope this helps, I think the biggest obstacles are at the beginning, when they're learning all the motor skills-crawling, walking etc.. there can be some spinal issues-curvature abnormalites that may need to be delt with, but a good chiropractor will be their best friend if that's the case. I wish you the best of luck. Keep positive and take one day at a time. My thoughts are with you and your family.

wowzer Community Regular

Dear Rachelle, Thank-you for your nice reply. I guess the hardest part is the waiting until my daughter gets her into the specialist. I know that my daughter will treat her as a normal child. Thank-you, Wendy

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,263
    • Most Online (within 30 mins)
      7,748

    LiaTom
    Newest Member
    LiaTom
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dana0207
      Thank you so much for your replies. Luckily the rash went away when I completely swore off gluten. It took several months but I have not had a flare in months. So a biopsy is no longer possible. The itch was terrible and apart from bleaching my skin the steroid lotions and potions did nothing. The Gliadin is for accidents and shall be a part of my travel kit from now on. This past exposure has made a me a little leery about eating anything that was not cooked in my kitchen or a dedicated gluten-free restaurant. As much as I used to love baked goods, I am cured and have become quite the gluten free baker to the point that friends and family forget that my cakes/cookies/and bread are not "real". I guess I will have to wait for the new blood test to come out to get confirmation but I have a suspicion that the rash was dermatitis herpetiformis.
    • Jmartes71
      Hello, I just wanted to share with the frustration of skin issues and seeing dermatologist and medications not working for years, I did my own healing experiment. As of last week I have been taking a drop internally under the tongue of Vetiver and putting on topically on sores Yellow/Pom.I am seeing a extreme difference at a rapid time.Im also noticing my nails a little harder. Ive always been into natural properties because I feel its safer for the body.I know short time, but really seeing a difference. I also feel the the trapped gases that causes bloating helps break down as well.Curious if any body else can benefit from and has tried. Products is made by Doterra by Dr Hill
    • Scott Adams
      We have a category of articles on this topic if you really want to dive into it: https://www.celiac.com/celiac-disease/miscellaneous-information-on-celiac-disease/gluten-free-diet-celiac-disease-amp-codex-alimentarius-wheat-starch/
    • Scott Adams
      I agree with @trents, and the rash you described, especially its location and resistance to steroids, sounds highly characteristic of dermatitis herpetiformis, which is the skin manifestation of celiac disease. The severe and prolonged reaction you're describing five days after a small exposure is, while extreme, not unheard of for those with a high sensitivity; the systemic inflammatory response can absolutely last for several days or even weeks, explaining why you still don't feel right. Your plan to avoid a formal gluten challenge is completely understandable given the severity of your reactions, and many choose the same path for their well-being. While experiences with GliadinX (they are a sponsor here) are mixed, some people do report a reduction in the severity of their symptoms when taken with accidental gluten, though it is crucial to remember it is not a cure or a license to eat gluten and its effectiveness can vary from person to person. For now, the absolute best advice is to continue being hyper-vigilant about cross-contamination—buffets are notoriously high-risk, even with good intentions. Connecting with a gastroenterologist and a dermatologist who specialize in celiac disease is essential for navigating diagnosis and management moving forward. Wishing you a swift recovery from this last exposure. 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:  
    • Scott Adams
      So just to be cautious, there is a big difference between cured, and responding to their medication. I assume you mean that your daughter responded well while taking KAN-101 during the trial, but the drug would not cure celiac disease, but may manage it while you are taking it. Let me know if I got this right.
×
×
  • Create New...