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

Update On Our Son

VydorScope

Recommended Posts

debbiewil Rookie
debbiewil
Posted

So glad to hear he's doing so well. I did know he had ear/hearing problems, so very glad that has been resolved. And keep those wonderful avatar pictures up to date. He's so precious!

Debbie

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

Celiac.com Sponsor (A8-M):


TCA Contributor
TCA
Posted

WOW vincent!!! I've even talked to you on the phone and I didn't realize about Timmy's hearing!!!!! What a wondeful praise!!!!!! I'm so glad he's doing so well. You never know what trials we my face, but isn't it wonderful to look back and see how God's carried you through it all? thanks for sharing all of this!

Hugs!

Tanya

VydorScope Proficient
VydorScope
Posted
  • Author

Thanks all, I did mention his hearing way back when he was getting ready to go under for the surgery but not since then, hence why I was asked for the update I am sure! :)

Judyin Philly Enthusiast
Judyin Philly
Posted

:o I had NO idea what all you've been through!!

Guess since i've been on for a year, just thought he had sever food allergies. Where have i been to have missed all the back ground. He is so blessed to have such 'terrific' parents who won't give up...bless your little family and prayers for more answers..

hugs

Judy in PHilly

VydorScope Proficient
VydorScope
Posted
  • Author

Well Because we found this site after getting him gluten-free he has been on the upswing the entire time this community has known him.

xander42204 Newbie
xander42204
Posted

Wow- what a truly inspiring story! Best of luck to you and your family!

mommida Enthusiast
mommida
Posted

Wow! I think I remember your first post. Isn't it amazing how much this group has bonded? I remember the day Tymber was having his ears done and having my kids pray for him. Thank s for the update I will tell my kids the good news.

L.

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

Celiac.com Sponsor (A8-M):


VydorScope Proficient
VydorScope
Posted
  • Author
Wow! I think I remember your first post. Isn't it amazing how much this group has bonded? I remember the day Tymber was having his ears done and having my kids pray for him. Thank s for the update I will tell my kids the good news.

L.

:blink: Gosh I hope it was a good post if you still remember it!! :blink:

mommida Enthusiast
mommida
Posted

If I remember it was a newbie post looking for help. :D

L.

VydorScope Proficient
VydorScope
Posted
  • Author

Wow I just looked it was on May 13 2005, 07:24 AM! Tim was 21 mos old, not 18!!! Dang it my memory stinks!!! :angry:

Anyways you did drop in to that thread, and nini, and others... 3 pages long.

Cheri A Contributor
Cheri A
Posted

I'm so glad that Timothy is doing so much better! I used baby signs with all of my kids. My son was a very late talker and he used them the most!

VydorScope Proficient
VydorScope
Posted
  • Author
I'm so glad that Timothy is doing so much better! I used baby signs with all of my kids. My son was a very late talker and he used them the most!

Yea its a great tool, we actaully useing real ASL, or well as close to it as he can manage. His dexterity is not up there yet. Learning a second language, not matter which one, is sposed to be great for develpoment, so we plan to keep it up. Though latly we been a bit lazy :lol:

VydorScope Proficient
VydorScope
Posted
  • Author

Well we had the "IEP" meeting today where they went over the results. If you remember back in Jan/December he was doing poorly and seeming to not improve at all. They retested him in march, and based on those tests he was still significantly delayed, but much improved. Well the newest test results are in, and he is no longer classified as disabled! He scores were border line, which is a huge improvement, and he continues to gain ground at a very fast rate. They said that we should watch him and call them again for retesting if he seems to level out, but as long as he continues to gain at the rate he is going we should have no further issues with speech and language with him. In the other areas, for example fine motor control, he was at or above age level.

The only note of interest they did talk about was his activity level was very high for his age level, they did make sure to point out several times that as his age there is no reason to worry about it, but it is something that will have to be watch as he ages.

So when he turns three he will "graduate" out of the special ed program and not return. Kristi and I plan to ask his speech therapist if we can make some out side arrangement to keep her on a bit longer to help get him that last little bit, but if we can not do that we are not concerned. He is speaking is full sentences now, for example "Can I have that?", its still touch and go with that, but slowly becoming normal.

So thats all we know for now!

AndreaB Contributor
AndreaB
Posted

That's great news Vincent. You and Kristi have obviously worked hard with him, it's great that it's paying off now. He must be so excited to be able to communicate more also. And with his energy level up I assume that means his diet has had a definite impact on that. :P

jerseyangel Proficient
jerseyangel
Posted

Fabulous news! Just wonderful--you both must be so pleased and relieved. :)

floridanative Community Regular
floridanative
Posted

Vincent - I did not know about Timothy's hearing problems. That is such awesome news about how well he's doing now! Prayer is a powerful thing....and having great parents doesn't hurt either! Good for you and your wife and the little guy of course!

VydorScope Proficient
VydorScope
Posted
  • Author

Thanks all!

And with his energy level up I assume that means his diet has had a definite impact on that. :P

No one can argue the impact of the diet. It literly saved his life, even the GI doc said all his numbers show it. While he does not have perfect tradtional dx for celiac disease, theres no question his health has had a remarkable turn around.

The last year with him (he was DX'd celiac disease when he was 21 months old not 18, ops :unsure: ) has been nothing but improvement apon improvement.

penguin Community Regular
penguin
Posted

That's awesome, Vincent! Make sure you don't let him forget his signs! Spanish was my first language (well, along with English, but my spanish was better) and I forgot it by the time I was 5 because nobody was around to talk to me in Spanish anymore :blink:

Although, since he's already had exposure to a second language at such a young age, it will probably be easier for him to learn other languages, signed or spoken :)

Guest BERNESES
Guest BERNESES
Posted

Vincent- That is SOOOOOOO great!!!!!!!!!!!!!!!!!!! Yippee!

chasesparents Rookie
chasesparents
Posted

Congratulations to you and your family!!! I am sure you are relieved that all is going well now !!!! :D

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.