Update On Our Son

[VydorScope]

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.

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" !!!

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

[penguin]

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

[CarlaB]

That's great news!!!

[jerseyangel]

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]

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.

[dlp252]

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.

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" !!!

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

Congratulations! What a wonderful blessing!

[VydorScope]

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!

[AndreaB]

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

[tarnalberry]

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

[zip2play]

That is wonderful. Such GREAT news!

Monica

[VydorScope]

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!

[Ursa Major]

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

[mouse]

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]

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!

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

[VydorScope]

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

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."

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....

[jenvan]

That's so great! Thanks for sharing!

[schuyler]

That's an awesome story Vincent. I'm glad that Tymber has made such an amazing turn around . 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]

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]

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

[debmidge]

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]

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]

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]

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

[queenofhearts]

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

Leah

[JenAnderson]

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.