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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,017
    • Most Online (within 30 mins)
      7,748
    Sjcucinotta
    Newest Member
    Sjcucinotta
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
    • knitty kitty
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By knitty kitty · Posted

      Please do more research before you settle on nicotine. Dr. Paul New house is a psychiatrist.  His latest study involves the effect of nicotine patches on Late Life Depression which has reached no long term conclusions about the benefits.   Effects of open-label transdermal nicotine antidepressant augmentation on affective symptoms and executive function in late-life depression https://pubmed.ncbi.nlm.nih.gov/39009312/   I'm approaching the subject from the Microbiologist's point of view which shows nicotine blocks Thiamine B1 uptake and usage:   Chronic Nicotine Exposure In Vivo and In Vitro Inhibits Vitamin B1 (Thiamin) Uptake by Pancreatic Acinar Cells https://pubmed.ncbi.nlm.nih.gov/26633299/   While supplementation with thiamine in the form Benfotiamine can protect from damage done by  nicotine: Benfotiamine attenuates nicotine and uric acid-induced vascular endothelial dysfunction in the rat https://pubmed.ncbi.nlm.nih.gov/18951979/   I suggest you study the beneficial effects of Thiamine (Benfotiamine and TTFD) on the body and mental health done by Dr. Derrick Lonsdale and Dr. Chandler Marrs.  Dr. Lonsdale had studied thiamine over fifty years.   Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ I suggest you read their book Thiamine Deficiency Disease, Dysautonomia, and High Calorie Malnutrition.     Celiac Disease is a disease of malabsorption causing malnutrition.  Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/
    • sleuth
      Nicotine Gum For Gluten Symptoms.. Am I Crazy?

      By sleuth · Posted

      Thanks for your response.  Everything you mentioned he is and has been doing.  Tobacco is not the same as nicotine.  Nicotine, in the form of a patch, does not cause gastrointestinal irritation.  Smoking does. He is not smoking.  Please do your research before stating false information. Dr. Paul Newhouse has been doing research on nicotine the last 40 years at Vanderbilt University Medical Center.  
    • Jmartes71
      Fighting for a name

      By Jmartes71 · Posted

      Im so frustrated and still getting the run around trying to reprove my celiac disease which my past primary ignored for 25 years.I understand that theres a ray of medical that doctors are limited too but not listening and telling the patient ( me) that im not as sensitive as I think and NOT celiac!Correction Mr white coat its not what I think but for cause and affect and past test that are not sticking in my medical records.I get sick violently with foods consumed, not eating the foods will show Im fabulous. After many blood draws and going through doctors I have the HLA- DQ2 positive which I read in a study that Iran conducted that the severity in celiac is in that gene.Im glutenfree and dealing with related issues which core issue of celiac isn't addressed. My skin, right eye, left leg diagestive issues affected. I have high blood pressure because im in pain.Im waisting my time on trying to reprove that Im celiac which is not a disease I want, but unfortunately have.It  has taken over my life personally and professionally. How do I stop getting medically gaslight and get the help needed to bounce back if I ever do bounce back to normal? I thought I was in good care with " celiac specialist " but in her eyes Im good.Im NOT.Sibo positive, IBS, Chronic Fatigue just to name a few and its all related to what I like to call a ghost disease ( celiac) since doctors don't seem to take it seriously. 
    • trents
      Celiac getting dentures

      By trents · Posted

      @Martha Mitchell, your reaction to the lens implant with gluten sounds like it could be an allergic reaction rather than a celiac reaction. It is possible for a celiac to be also allergic to gluten as it is a protein component in wheat, barley and rye.
×
×
  • 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.