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suziq0805

Member Since 22 Jan 2011
Offline Last Active Jun 04 2013 07:12 AM
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#725416 Is This Normal?

Posted by suziq0805 on 24 August 2011 - 07:15 PM

I've often had issues with my arms going numb while I am sleeping....I literally can't feel them. Just curious as to whether this is normal or not. I tend to sleep in crazy positions and do tend to sleep on my arms, so when I do that it would make sense that I could just be cutting off the circulation. When that happens and I wake up then I just move my arms and after a couple minutes everything is back to normal. But there are also times where I couldn't be cutting off circulation and my arms are slightly above my head and the same thing happens. Is this normal or not?? I have dealt with minor nerve pain and lots of muscle pain/weakness in my arms the past few years and am just curious to see if this arm numbness happens to everyone or if it could be related to the pain/weakness issues in my arms.
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#682551 How Would You Handle A School Like This?

Posted by suziq0805 on 11 March 2011 - 03:13 PM

I'm a teacher so hopefully I can help you out here. All staff just needs to be aware that even a tiny crumb can be harmful to you child. If they don't completely understand celiac they may think that if they are not seeing a reaction then they must be doing everything correctly.

Our district prepares all of our lunches in a central location and then they are loaded on trucks and driven over to the individual schools. So the staff that is serving the lunches truly may not know if something is gluten free. If your school operates like this, the staff serving is not those that are preparing.

As far as the bullying issue. Our staff has been reading a couple of AWESOME books. If you haven't read them I would highly recommend them- you won't regret reading them. Jodee Blanco is an author that has written 2 books (Please Stop Laughing at Me and Please Stop Laughing at Us). She also has a national speaking tour where she goes out to speak to schools to help them with bullying issues. She was bullied as a child and has written these books about her experiences. In them she offers advice to help families effectively help children that are being bullied. I loved both books. It opened my eyes as to how ineffective parents and teachers can be in dealing with it- even if they really think they are doing the right thing.
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#677847 Burning Skin Sensations

Posted by suziq0805 on 23 February 2011 - 03:37 PM

My blood work was NEG too. My doctor said NEG blood work happens too frequently and that all my symptoms are enough for him. Me, too! I refuse to eat gluten to have a biopsy. No way--I cannot be that spacey- headed or sick on a daily basis ever again! THAT is very scary.

I have the exact same thing. Weak hip/abs/legs (post hyster) and awful pelvic pain. I can hardly sit/lie down comfortably. My PT said the SAME thing!! Compression and weakness and nerve entrapment. The pelvic area throws off the rest of the spine, neck. I have horrific neck/jaw pain. My back kills me. No chiro, PT, acupuncture has ever helped. It's a big cascade, obviously. I continue with PT, but my muscles are so weak and I lost so much muscle mass and tone to being ill with this disease.


I hope your son feels better soon! I hope you get answers. Thanks for your thoughts.


That's really interesting to know that your experience is so similar to mine. I had muscle pain/weakness/tightness in both arms up through my shoulders, constantly tight muscles in my neck and upper back, headaches, jaw pain, this weird pressure/throbbing in my ears, burning pain in my armpits, occassional tingling in my pinky and ring fingers, occassional elbow and wrist pain and knee pain. I am a music teacher and all these things began in college while I was spending a lot of time on the computer doing homework and hours and hours practicing flute and piano. So my diagnosis of an overuse injury combined with the fact that I was in a car accident and received bad whiplash did kinda make sense, but yet I did wonder what was up when my pain "spread" from just the wrist area to more and more of my body. It was to the point where my arms were so weak it was difficult to make it through conducting a rehearsal with my students because my arms felt so heavy to hold up to conduct. But physical therapy did help. I'm not 100%, but I can function pretty normally during the day. I've also limited my music activities to avoid aggravating things because I do notice that when I've used those muscles a lot my symptoms do get worse. So I guess we'll see what happens over the next few months. Makes me curious to try a gluten-free diet, but yet I know I shouldn't in case I need a biopsy. I guess we'll see what the next few months bring.
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#669797 Cc At School

Posted by suziq0805 on 22 January 2011 - 12:44 PM

I'm sure this subject has come up many times so sorry in advance. I believe that my son may be getting some CC at school. He is in kindergarden and everyday they have a snack. I have safe snacks for him at school so that is not the problem. I think he may be getting cc'd in his classroom. They have group seating (I so disagree with for many reasons) and four to five children sit at a table. The other children at his table eat wheat/gluten containing products as does every other child in the room. I told the teacher about the table needing wiped down after the kids eat their snack but according to my son it isn't getting done. Also after snack and during, the other children are touching him and don't wash after. I realize that the teacher probably is time conscious. Also I discussed with her before Christmas the need for him to wash with soap and water before he goes to lunch. Instead they are using hand sanitizer which I also told her was great for germs but won't get gluten residue off his hands. So here are my questions How do I address this with his teacher again? Is it too much to ask for the other children to wash after snack? I'ts obvious that the table needs wiped down after snack but should all be wiped down every day? Periodically they rearrange seating so he will be moved to another table. I also realize that they can't guarantee that he won't have some exposure but I think with some extra planning it can be reduced. At lunch they have him sit at the allergy table (mostly kids that are peanut allergic) so as for peanut contamination they keep it very clean, but I'm sure he is sitting with kids that consume gluten. I have told him to not touch others food and not let the other kids touch his. So I guess I need some more advice on what to do. I do believe that he may be one of the only children in the school with celiac.




I am an elementary teacher so hopefully I can offer some help! I would say speak with the teacher again- if you haven't already. Make sure she realizes the importance of your requests. Keeping up with a room full of little ones isn't easy and if she's not aware damamge can happen to your child that's not visible she may think she's doing everything right. Also maybe try something like..."I know your day is very busy and I can't imagine keeping up with a room full of little kids every day so please know that my requests are in no way an attempt to add even more to your daily things to do, but come from what is medically necessary for my child". Sometimes teachers just get a bit overwhelmed with things to do and if she realizes the importance hopefully she will accommodate everything. Type out what they need to do for your child. Speak with the principal also. Maybe the principal would be willing to send a memo to the entire staff briefly explaining celiac and the nonvisible effects of eating gluten so that every staff member is aware. Your child will be in several classrooms throughout the day (art, music, PE, computer, lunchroom, and our school has students in upper grade levels be kindergarten "buddies" where they help with reading or crafts and such). Making sure the entire staff is on board would be awesome. Every year my school sends out a list of students with medical issues so that all staff can be aware. Students with severe medical issues (allergies that need an epi pen or seizures) we sometimes discuss at staff meeting so that teachers that have duty in the lunch room or recess know this too. Also see if there can be a note added to her substitute folder. Teachers usually have a sub. folder (a folder of info for the classroom that is ready to go for whenever a teacher is gone). A note in here would be wonderful so that if she gets ill overnight and does not have lesson plans written in advance then there will be a note in that folder so any substitute can be aware of what needs to be done for your child during the day. I would almost insist on this because even the best principal or secretary can forget to mention it to a substitute or may be at a meeting or sick themselves and not able to share the info with substitutes.
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