Update

[Guest guest]

Hi Tim,

Thanks for the update. We are all very interested in your work (and of course

your family). It sounds like

you are all " charged " up these days!

Best regards,

Anne, mom of Penina (CHArgE, who will be 6 in August and who just had her 2

bottom front baby teeth pulled

yesterday - she was so good and cooperative, and she laughed delightedly at the

weird sensation of the local

anesthesia - the entire dental office was charmed!)

[Guest guest]

Hi Tim,

Thanks for the update. We are all very interested in your work (and of course

your family). It sounds like

you are all " charged " up these days!

Best regards,

Anne, mom of Penina (CHArgE, who will be 6 in August and who just had her 2

bottom front baby teeth pulled

yesterday - she was so good and cooperative, and she laughed delightedly at the

weird sensation of the local

anesthesia - the entire dental office was charmed!)

[Guest guest]

Ouch!! Kay -- You will be in my thoughts! I hope you find the answers

and get this resolved soon. My friend's mom is diabetic and has something

else too but I can't remember what. She has symptoms like you are

describing.

Michele W

Aubrie's mom

Update

> Hello,

>

> For those of you new to the list who do not know me, I am a 48-year-old

> charger.

>

> I am having some new health problems. I never had trouble with my heart

and

> we are not sure if this is my heart or diabetes or what. My feet, ankles,

> and legs up to just below my knees are red, itchy, swollen, and have pain.

> The doctor put me on a heavy dosage of diuretics, I have to keep my feet

> propped up, and he did blood work. We don't know what it is yet. I don't

> know if this is a charge issue or just something new.

>

> Kay

>

> If you need prayer Join my email list:

> prayingforyou-subscribe@...

>

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Kay,

I hope the diruetics work, it sounds very uncomfortable - are they sending you

for tests to try and figure out what it is?

Take care,

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Update

Hello,

For those of you new to the list who do not know me, I am a 48-year-old

charger.

I am having some new health problems. I never had trouble with my heart and

we are not sure if this is my heart or diabetes or what. My feet, ankles,

and legs up to just below my knees are red, itchy, swollen, and have pain.

The doctor put me on a heavy dosage of diuretics, I have to keep my feet

propped up, and he did blood work. We don't know what it is yet. I don't

know if this is a charge issue or just something new.

Kay

If you need prayer Join my email list:

prayingforyou-subscribe@...

[Guest guest]

Kay,

I hope the diruetics work, it sounds very uncomfortable - are they sending you

for tests to try and figure out what it is?

Take care,

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Update

Hello,

For those of you new to the list who do not know me, I am a 48-year-old

charger.

I am having some new health problems. I never had trouble with my heart and

we are not sure if this is my heart or diabetes or what. My feet, ankles,

and legs up to just below my knees are red, itchy, swollen, and have pain.

The doctor put me on a heavy dosage of diuretics, I have to keep my feet

propped up, and he did blood work. We don't know what it is yet. I don't

know if this is a charge issue or just something new.

Kay

If you need prayer Join my email list:

prayingforyou-subscribe@...

[Guest guest]

Hi ,

They did blood work and we are waiting for the results.

Kay

Update

>

>

> Hello,

>

> For those of you new to the list who do not know me, I am a 48-year-old

> charger.

>

> I am having some new health problems. I never had trouble with my heart

and

> we are not sure if this is my heart or diabetes or what. My feet,

ankles,

> and legs up to just below my knees are red, itchy, swollen, and have

pain.

> The doctor put me on a heavy dosage of diuretics, I have to keep my feet

> propped up, and he did blood work. We don't know what it is yet. I don't

> know if this is a charge issue or just something new.

>

> Kay

>

> If you need prayer Join my email list:

> prayingforyou-subscribe@...

>

>

>

>

[Guest guest]

Yes its uncomfortable and hoping to be better soon. I had to wear shoes to

go to church and they were tight.

Kay

Update

>

>

> > Hello,

> >

> > For those of you new to the list who do not know me, I am a 48-year-old

> > charger.

> >

> > I am having some new health problems. I never had trouble with my heart

> and

> > we are not sure if this is my heart or diabetes or what. My feet,

ankles,

> > and legs up to just below my knees are red, itchy, swollen, and have

pain.

> > The doctor put me on a heavy dosage of diuretics, I have to keep my feet

> > propped up, and he did blood work. We don't know what it is yet. I don't

> > know if this is a charge issue or just something new.

> >

> > Kay

> >

> > If you need prayer Join my email list:

> > prayingforyou-subscribe@...

> >

> >

> >

> >

> > Membership of this email support groups does not constitute membership

in

> the CHARGE Syndrome Foundation.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter)

> > please contact marion@... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

> >

> >

[Guest guest]

Oh, Kay: my good thoughts are with you. We,too, keep coming up with new

issues. It is not fun. Martha

[Guest guest]

Oh, Kay: my good thoughts are with you. We,too, keep coming up with new

issues. It is not fun. Martha

[Guest guest]

Thanks to all of you. I am going out of town and flying to Savannah Ga and

back this week end coming up. I probably should have said no but I was

offered a scholarship to go so I am going. I fly down on Friday and back on

Saturday night. It is a short flight but will be a lot of sitting around the

airport. I sure hope my legs will cooperate throughout this.

Kay

Re: Update

> Oh, Kay: my good thoughts are with you. We,too, keep coming up with

new

> issues. It is not fun. Martha

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Thanks to all of you. I am going out of town and flying to Savannah Ga and

back this week end coming up. I probably should have said no but I was

offered a scholarship to go so I am going. I fly down on Friday and back on

Saturday night. It is a short flight but will be a lot of sitting around the

airport. I sure hope my legs will cooperate throughout this.

Kay

Re: Update

> Oh, Kay: my good thoughts are with you. We,too, keep coming up with

new

> issues. It is not fun. Martha

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Pushpa,

So sorry that things are still in a difficult stage for your family. I can't

imagine being in the hospital as much as your children have had to be with

little Aman. I wish them & you much strength....

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Update

Its been a long time since I posted an update on Aman, its been a roller

coaster ride since we arrived in Toronto in July and went straight to the

hospital since Aman was admitted that day. He was a

year old on 21st October. he has been in the hospital from birth till 17th of

May, underwent laser surgeries, several intubations and a seizure, then since

7th July he has been in hospital 3 times, this time he went in on 28th September

and was in ICU for a very long time. Right now though he is in the wards on the

7th floor of Sick kids, he is on bi-pap in the nights and sometimes even during

the day, to add to it he has developed an infection in the kidney. On his

birthday he was very sick with high fever and we had a difficult day. Pushpa

grandma to Aman

[Guest guest]

Hi Pushpa,

Thanks for the update. Happy birthday to little Aman.

How fortunate that you are able to give your son and daughter in law some

respite. Can you imagine how much more difficult this ordeal would have been for

everyone without your strength?

I hope Aman will be able to come home soon (and that the kidney infection heals

quickly). Then life can normalize. In the meantime we send our very best wishes

to all.

BTW, I realize that you have traveled quite a bit and that you are not

unaccustomed to different climates. I just wanted to send a gentle reminder in

case you have not experienced a Canadian Winter (at least Southern Ontario is

about 5 degrees Celsius warmer than Montreal, but Toronto gets very damp and

windy)! I strongly recommend a heavy investment in winter gear. Really!

Regards,

Anne, mom of Penina (CHARGE, 6)

[Guest guest]

It is so nice to hear from you again Pushpa, I am sorry Aman has to

be back in hospital. I hadn't seen posts from you in a while so I

was hoping all was well at home. I think of Aman often since he and

Ethan are so close in age and both in Canada.

Are the doctors talking about a tracheostomy at all for Aman? I

can't even believe that I am saying this now because of how opposed

to it I was when Ethan was in hospital and could not be extubated.

But I see now how much it has improved his quality of life. Ethan

came out of the hospital on July 4, and has not been back except for

choanal atresia surgery in Sept. He is growing and developing and

well, healthy! The trach is a LOT of work, I won't downplay that,

between night nurses, constant supervision, and difficulty getting

around with the extra equipment. But it sure beats being in the

hospital. And it beats watching your child stagnate at development

wondering if he'll ever move on. Ethan had big reflux problems too

which made it hard for him to develop, so the fundoplication played a

big part in his progress too. But with the trach we know he can

always breathe, and we have a sat monitor to let us know if he needs

oxygen. Sorry to ramble on, maybe it's not a consideration in Aman's

case, but we are here if you or Amrit or Mehta need to talk about

anything.

, mom to Ethan 1 year

Regina, Saskatchewan, Canada

> Its been a long time since I posted an update on Aman, its been a

roller coaster ride since we arrived in Toronto in July and went

straight to the hospital since Aman was admitted that

day. He was a year old on 21st October. he

has been in the hospital from birth till 17th of May, underwent laser

surgeries, several intubations and a seizure, then since 7th July he

has been in hospital 3 times, this time he went in on 28th September

and was in ICU for a very long time. Right now though he is in the

wards on the 7th floor of Sick kids, he is on bi-pap in the nights

and sometimes even during the day, to add to it he has developed an

infection in the kidney. On his birthday he was very sick with high

fever and we had a difficult day. Pushpa grandma to Aman

>

>

[Guest guest]

, the hospital atmosphere is indeed very stressful, and one year is a long

time, we can only pray for strength to face the situation, Pushpa grandma to

Aman 1 year

[Guest guest]

, the hospital atmosphere is indeed very stressful, and one year is a long

time, we can only pray for strength to face the situation, Pushpa grandma to

Aman 1 year

[Guest guest]

Anne, we are fortunate to be here with the children rather than worry long

distance, but we will have to leave shortly as we are unable to get revised

bookings and an extension for our medical insurance. Thank you so much for your

care and concern regarding the climate, it is a big change for us after the

perpetual hot weather we are used to. Pushpa grandma to Aman 1 year

[Guest guest]

Anne, we are fortunate to be here with the children rather than worry long

distance, but we will have to leave shortly as we are unable to get revised

bookings and an extension for our medical insurance. Thank you so much for your

care and concern regarding the climate, it is a big change for us after the

perpetual hot weather we are used to. Pushpa grandma to Aman 1 year

[Guest guest]

, its nice to hear from you too. Aman is fine with prongs during the

day and bi-pap at nights, and he has been gaining regular weight and is in the

normal range. Thanks for offering to speak to the children, will let them know.

Its good to know that Ethan is doing well and you have taken the right decisions

for him. Also noted about his motor developments and the sudden support from

everyone in meeting with the medical and travel costs, we are so happy for

Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma

to Aman 1 year

[Guest guest]

, its nice to hear from you too. Aman is fine with prongs during the

day and bi-pap at nights, and he has been gaining regular weight and is in the

normal range. Thanks for offering to speak to the children, will let them know.

Its good to know that Ethan is doing well and you have taken the right decisions

for him. Also noted about his motor developments and the sudden support from

everyone in meeting with the medical and travel costs, we are so happy for

Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma

to Aman 1 year

[Guest guest]

, its nice to hear from you too. Aman is fine with prongs during the

day and bi-pap at nights, and he has been gaining regular weight and is in the

normal range. Thanks for offering to speak to the children, will let them know.

Its good to know that Ethan is doing well and you have taken the right decisions

for him. Also noted about his motor developments and the sudden support from

everyone in meeting with the medical and travel costs, we are so happy for

Ethan. God has his ways of reaching to help through his Angels. Pushpa grandma

to Aman 1 year

[Guest guest]

Hi Pushpa,

How is Aman doing - it has been a long haul with hospital stays! has

had a kidney infection before and she got very ill with it so I hear your

concern here. I'm writing hoping that Aman has safely come home and is

feeling better. I would love to hear how he is feeling now. Please give my

love and thoughts to Amrit and Poonham.

Pat

Pat, , (15), (11-CHARGE)

Rittgasser

Keswick, Ontario

Canada

Update

Its been a long time since I posted an update on Aman, its been a roller

coaster ride since we arrived in Toronto in July and went straight to the

hospital since Aman was admitted that day. He was

a year old on 21st October. he has been in the hospital from birth till 17th

of May, underwent laser surgeries, several intubations and a seizure, then

since 7th July he has been in hospital 3 times, this time he went in on 28th

September and was in ICU for a very long time. Right now though he is in the

wards on the 7th floor of Sick kids, he is on bi-pap in the nights and

sometimes even during the day, to add to it he has developed an infection

in the kidney. On his birthday he was very sick with high fever and we had a

difficult day. Pushpa grandma to Aman

[Guest guest]

Thanks Pat for your concern, Aman came home on thursday 31st october after

being more than a month in hospital, with the Bi-Pap at night and prongs in the

day for oxygen he is comfortable. We are leaving this week for India, and should

be back next year. Pushpa grandma to Aman 1 year old.

[Guest guest]

why would you be tested every week? Did the DR do that?

Update

I posted last month as a new member. I have since found additial info that I would like input on. I have enjoyed reading the posts and they have really helped.6/21 TSH 9.06 (Range 0.32-5.00)Prolactin 36.8 (Range 3.4-24.1)Free T4 .9 (Range 0.7-1.9)6/24 TSH 4.66 (Range 0.32-5.00)Free T4 .88 (Range 0.7-1.9)7/8 TSH (3rd Generation) 6.954 (Range 0.35-5.50)Tree Thyroixing Index (T7) 7.2 (Range 6.0-11.4)Total T4 7.4 (Range 6.5-10.5)T3 Uptake 30.98 (Range 24.4-39.1)Triiodothyronine Free (Free T3) 4.3 (Range 2.3-4.2)NEW INFORMATION:I was going thru my files, and found that back in 1995, my GP at the time sent me in for thyroid labs due to enlarged thyroid from the cliical exam. I don't have the results for that.In 2001, I had lab work done due to an enlarged thyroid. TSH was 4. something and T4 was 1.somthing. Ultrasound was normal. I was very sick at this time. I lost 10 pounds over a months time (I am thin to begin with), lost appetite. Face/hand tingling, muscle twitching. Scared me to death! I recovered slowly on my own. I feel like the same thing is happening to me now, I'm just not as scared.So here I am, nine years later on Levoxyl .025. I have been taking it for about three weeks. This week I noticed tingling in my hands/face, increased hunger. My indigestion that I had the first week has mostly gone away. I understand about adrenal support.My question: Could my new symptoms mean that I am going hyper? Could the meds be causing my tingling? I had this tingling in 2001 when they sent me for labs/ultrasound on my thyroid and everything was normal. I also had a CT and MRI. All ok. Could my symptoms back then have been hyper?I will be getting the antibody tests done on 8/19 when I go see my new GP.Thank you all for reading this and giving me your advice.

[Guest guest]

why would you be tested every week? Did the DR do that?

Update

I posted last month as a new member. I have since found additial info that I would like input on. I have enjoyed reading the posts and they have really helped.6/21 TSH 9.06 (Range 0.32-5.00)Prolactin 36.8 (Range 3.4-24.1)Free T4 .9 (Range 0.7-1.9)6/24 TSH 4.66 (Range 0.32-5.00)Free T4 .88 (Range 0.7-1.9)7/8 TSH (3rd Generation) 6.954 (Range 0.35-5.50)Tree Thyroixing Index (T7) 7.2 (Range 6.0-11.4)Total T4 7.4 (Range 6.5-10.5)T3 Uptake 30.98 (Range 24.4-39.1)Triiodothyronine Free (Free T3) 4.3 (Range 2.3-4.2)NEW INFORMATION:I was going thru my files, and found that back in 1995, my GP at the time sent me in for thyroid labs due to enlarged thyroid from the cliical exam. I don't have the results for that.In 2001, I had lab work done due to an enlarged thyroid. TSH was 4. something and T4 was 1.somthing. Ultrasound was normal. I was very sick at this time. I lost 10 pounds over a months time (I am thin to begin with), lost appetite. Face/hand tingling, muscle twitching. Scared me to death! I recovered slowly on my own. I feel like the same thing is happening to me now, I'm just not as scared.So here I am, nine years later on Levoxyl .025. I have been taking it for about three weeks. This week I noticed tingling in my hands/face, increased hunger. My indigestion that I had the first week has mostly gone away. I understand about adrenal support.My question: Could my new symptoms mean that I am going hyper? Could the meds be causing my tingling? I had this tingling in 2001 when they sent me for labs/ultrasound on my thyroid and everything was normal. I also had a CT and MRI. All ok. Could my symptoms back then have been hyper?I will be getting the antibody tests done on 8/19 when I go see my new GP.Thank you all for reading this and giving me your advice.