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

VydorScope Proficient
VydorScope
Posted

Ive been asked for an update on my son... so here it be!

First a refresher...

Timothy (aka Tymber) was born on Aug 13th, 2003 and well that was just the start of his troubles. :( Well the first week went okay, but after that it went downhill fast. To the point where I would hold him at night (his mom was passed from exhustion by that time we took turns best we could), while he just screamed in and writhed in pain for 45mins to an hour. At first docs/etc thought it was acid reflux so we treated that and it did reduced the issues, but not cure it. Eventually he seemed to get better, so everyone thought he was out growing it, eventually though it came back, and much worse. Jumping foward in time (so not to depress to many ppl, but this continued on for a while..) to 18mos he was, IMO, dieing. Literly shrinking physicaly and mentally regressing. Some one on my forum mention celiac disease and we instantly tried a gluten-free diet. With in a week we started seeing results. He has had biospies, blood tests, barium seris and all that, but with out that nice lady (goes by Orionlover) on my forums we might not have ever guessed.

Minor side note, it was my GI doc that sent us to this site for more info/help. :P

Well he was getting better and better, but still was not picking up any langauge, save about a dozen signs we taught him. So last october we had his hearing tested, he came back completely 100% deaf in the left ear, but right ear was okay. Doc's thought it was fuild build up so they started antibotics (tried 2 rounds of 2 dif ones). Hes next hearing test in late December showed him completely death in BOTH ears. We know he could hear some, but it was below the range of the test eqiupment since it always showed 0. Antiboitics did not do anything at all.

Late January the docs put him under AGAIN and went in to drain fluid out from behind his eardrums, turns out there was no fuild, it was a gooey mess, docs words were 'its one of the worst cases I have ever seen'. THey got it cleaned out and put the tubs in with out issue. He was extremely close to PERMANT hearing loss, if not for the hearing screening in october....

THAT VERY DAY he started doing something he has never down before... mimic sounds around him! By the end of that week he was up to dozen or so words! THat was last January. Its now July in case you forgot :)

The entire time he has been getting speical tutors from the state for speach/etc and was making 0 progress. At 2 years old he was scoring about equal to a 10month old.

Well last firday we took him in for a re-evaluation this time by the city. Once he turns 3, he will graduate from the state program, and start with the city so they needed to do thier own testing. We do not have the official results yet, but we asked the tester, unofficially what she thought and she said "I would be surprised if he qualifies, but I still need run the numbers" !!! :o

What a major turn around!! A real answer to all the prayers of the faithful thats for sure!!!

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted

That's awesome, Vincent! I didn't know about all of his hearing troubles! I'm glad he got his hearing back!

You should still teach him sign language though, since it's such a cool way to communicate :D

CarlaB Enthusiast
CarlaB
Posted

That's great news!!!

jerseyangel Proficient
jerseyangel
Posted

Hi Vincent--haven't caught up with you in a while! That is such great news about Tim--the little guy has been through so much in his young life. Now, the sky's the linit for him! You and your wife should be very proud--you're wonderful parents. Thanks for sharing :)

AndreaB Contributor
AndreaB
Posted

That's a wonderful story Vincent!

I didn't realize all the problems he had as a baby and then with his hearing. Praise the Lord that that was caught on time. :D

dlp252 Apprentice
dlp252
Posted
Ive been asked for an update on my son... so here it be!

First a refresher...

Timothy (aka Tymber) was born on Aug 13th, 2003 and well that was just the start of his troubles. :( Well the first week went okay, but after that it went downhill fast. To the point where I would hold him at night (his mom was passed from exhustion by that time we took turns best we could), while he just screamed in and writhed in pain for 45mins to an hour. At first docs/etc thought it was acid reflux so we treated that and it did reduced the issues, but not cure it. Eventually he seemed to get better, so everyone thought he was out growing it, eventually though it came back, and much worse. Jumping foward in time (so not to depress to many ppl, but this continued on for a while..) to 18mos he was, IMO, dieing. Literly shrinking physicaly and mentally regressing. Some one on my forum mention celiac disease and we instantly tried a gluten-free diet. With in a week we started seeing results. He has had biospies, blood tests, barium seris and all that, but with out that nice lady (goes by Orionlover) on my forums we might not have ever guessed.

Minor side note, it was my GI doc that sent us to this site for more info/help. :P

Well he was getting better and better, but still was not picking up any langauge, save about a dozen signs we taught him. So last october we had his hearing tested, he came back completely 100% deaf in the left ear, but right ear was okay. Doc's thought it was fuild build up so they started antibotics (tried 2 rounds of 2 dif ones). Hes next hearing test in late December showed him completely death in BOTH ears. We know he could hear some, but it was below the range of the test eqiupment since it always showed 0. Antiboitics did not do anything at all.

Late January the docs put him under AGAIN and went in to drain fluid out from behind his eardrums, turns out there was no fuild, it was a gooey mess, docs words were 'its one of the worst cases I have ever seen'. THey got it cleaned out and put the tubs in with out issue. He was extremely close to PERMANT hearing loss, if not for the hearing screening in october....

THAT VERY DAY he started doing something he has never down before... mimic sounds around him! By the end of that week he was up to dozen or so words! THat was last January. Its now July in case you forgot :)

The entire time he has been getting speical tutors from the state for speach/etc and was making 0 progress. At 2 years old he was scoring about equal to a 10month old.

Well last firday we took him in for a re-evaluation this time by the city. Once he turns 3, he will graduate from the state program, and start with the city so they needed to do thier own testing. We do not have the official results yet, but we asked the tester, unofficially what she thought and she said "I would be surprised if he qualifies, but I still need run the numbers" !!! :o

What a major turn around!! A real answer to all the prayers of the faithful thats for sure!!!

Congratulations! What a wonderful blessing!

VydorScope Proficient
VydorScope
Posted
  • Author

Thanks all!

We do plan to continue with teaching him ASL, both Kristi and I attend free ASL classes presently.

Just a minor side note, the GI thats been treating my son since the dx of celiac disease is the same one thats now caring for TCA's daughter Megan. This GI has given me ever reason to think that Megan is in good hands from that perspecitive at least!

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

Celiac.com Sponsor (A8-M):


AndreaB Contributor
AndreaB
Posted

Thanks Vincent. It nice to know Megan's in good hands.

tarnalberry Community Regular
tarnalberry
Posted

congrats! that's fabulous that he's doing so much better! :-)

zip2play Apprentice
zip2play
Posted

That is wonderful. Such GREAT news!

Monica

VydorScope Proficient
VydorScope
Posted
  • Author

I was just thinking.. I skipped over the part where he got FIVE stiches in his head due to falling head first on to a cabient courner... that just seems so minor... its scary what leve you get used to! :huh::huh:

Ursa Major Collaborator
Ursa Major
Posted

Vincent, what good news! To be told your kid is perfectly normal and healthy is the best news imaginable.

mouse Enthusiast
mouse
Posted

Thank you for posting the update about Timothy. I knew he had some hearing loss, but did not know that it had gotten so much worse. That is great news that they caught it in time and that he is really learning to talk and can now hear. You and your wife are wonderful parents and Timothy is so lucky to have you as parents. That is also great news that Megan is in good hands.

penguin Community Regular
penguin
Posted
I was just thinking.. I skipped over the part where he got FIVE stiches in his head due to falling head first on to a cabient courner... that just seems so minor... its scary what leve you get used to! :huh::huh:

If it makes you feel any better, between the ages of 1 and 3, I:

- Ran into a wall, needed stitches

- Had my sister's dog attack me unprovoked, reconstructive surgery on my face

- Got bitten by the neighbor's boa constrictor (on eyelid), stitches

- Fell down stairs and knocked one of my front teeth out on the concrete

- Ran into a counter, knocked out the other front tooth

- Had a vase fall on my head, needed stitches

After that, I wasn't so accident prone :rolleyes:

VydorScope Proficient
VydorScope
Posted
  • Author
If it makes you feel any better, between the ages of 1 and 3, I:

- Ran into a wall, needed stitches

- Had my sister's dog attack me unprovoked, reconstructive surgery on my face

- Got bitten by the neighbor's boa constrictor (on eyelid), stitches

- Fell down stairs and knocked one of my front teeth out on the concrete

- Ran into a counter, knocked out the other front tooth

- Had a vase fall on my head, needed stitches

After that, I wasn't so accident prone :rolleyes:

Funny thing about me as a child, my mom calims I feel down the stairs at one point... the medical records state "...was drop on his head from a hieght of about six foot on to concrete, no appearent injury."

:blink:

But I think I did better hten you .. did not get my first stiches till middle of elementry school when I sorta kind of leaped on to a metal stake.... :D

jenvan Collaborator
jenvan
Posted

That's so great! Thanks for sharing!

schuyler Apprentice
schuyler
Posted

That's an awesome story Vincent. I'm glad that Tymber has made such an amazing turn around :D. Being able to sign is such a useful skill (you'd be suprised how often I have to use ASL when I'm out in public), so I think it's great that you will continue to teach him ASL.

Danielle

BTW, I LOVE his curly, red hair. Too cute!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Oh Vincent, I am so happy!!! He sounds like he is doing GREAT! We had that trouble with Ashley . . . I was fortunate that at 9 months, they caught that she wasn't making sounds that were "pre-talk" -- only pointing to everything, with no sounds. She had so many infections . . . I took her to the Ear Nose & Throat doctor, and he said that her hearing loss was so profound that she needed tubes immediately. He didn't do the permanent ones, but he did use Stainless Stell vs. just the plastic that they usually use. He said that they did a better job of keeping the ears drained, and they stayed in longer. They lasted until she was 3 1/2 . . . and she ended up doing really well verbally.

Kids catch up so quickly . . . . Tymber will be talking up a storm in no time! I am so glad. What a blessing . . .

Hugs to you BOTH,

Lynne

Guest BERNESES
Guest BERNESES
Posted

That is SO great- but gosh, what a scary story. I'm so glad he is doing so well!!!!! You are truly blessed!

debmidge Rising Star
debmidge
Posted

Vincent

Good news for Tim - glad they found a way to correct some of these issues for him so he can get on with being a child.

Debbie

Nic Collaborator
Nic
Posted

Vincent,

This may be a silly question, but did the ear trouble have anything to do with the Celiac or is that a separate issue? I only ask because my youngest son, not diagnosed as a Celiac (and no syptoms either) had a similar problem with his ear (just one though) and after the tubes was fine. Still receiving speech therapy at 4. I read another post the other day from a parent discussing Celiac and hypotonia which the poor kid also has, physical and occupational therapy as well. I never knew until I now researched it that hypotonia could be a symptom of Celiac. I just want to make sure I am not missing anything with the ears too. He was tested for Celiac but tested negative but I know that can be inaccurate under 5. Sorry to sound so ignorant.

Nicole

VydorScope Proficient
VydorScope
Posted
  • Author
Vincent,

This may be a silly question, but did the ear trouble have anything to do with the Celiac or is that a separate issue? I only ask because my youngest son, not diagnosed as a Celiac (and no syptoms either) had a similar problem with his ear (just one though) and after the tubes was fine. Still receiving speech therapy at 4. I read another post the other day from a parent discussing Celiac and hypotonia which the poor kid also has, physical and occupational therapy as well. I never knew until I now researched it that hypotonia could be a symptom of Celiac. I just want to make sure I am not missing anything with the ears too. He was tested for Celiac but tested negative but I know that can be inaccurate under 5. Sorry to sound so ignorant.

Nicole

Its not a silly question, however I do not think the ears and celiac disease are related in my sons case. I do think that the develmental delays are directly related, and anytime he has been glutened since they repeat.

wolfie Enthusiast
wolfie
Posted

Wow....so glad that he is doing so well!!! That is an awesome turn around! :)

queenofhearts Explorer
queenofhearts
Posted

Great news about Tim. You've been through quite an ordeal! I'm glad he's so much better.

Leah

JenAnderson Rookie
JenAnderson
Posted

Wow Vincent!! I'm so glad that he's ok! He's such a beautiful little boy. I just love all those red curls.

You two are truly wonderful parents.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions...
    2. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know. I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past...
    3. nanny marley
      - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I...
    4. David Blake
      - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

      My question I have proposed to the FDA through their website is why Prescription and OTC drug manufacturers are not required to list what binding ingredients were used to bine the drug? They list this on Capsules which are made of cellulose but not on pills? As it stands I or my pharmacist must contact the manufacturer to find out and my list is long from...
    5. nanny marley
      - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748
    emoryprose
    Newest Member
    emoryprose
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Insomnia help

      By nanny marley · Posted

      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      nothing has changed

      By nanny marley · Posted

      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.