Re: Other in Toronto Area

[Guest guest]

Tonya, you sound much like me. I live in the King City area-north of

Toronto. My son has been diagnosed with in the last couple of

weeks. I have not been able to contact my ped. to have him send me to

an immunologist at Sick Kids. His secretary is awful. We saw a Rheum.

She wanted to start him on Cimetidine. I bought the pills because the

pharm. looked at me funny because she said they don't have a liquid

version. They would have to order it in. I finally decided to hold off

on giving him the pills anyway. I came across this forum and I realized

that a T/A is the way to go. The Rheum. is not happy. I see her on

Friday to discuss the matter but I have surgery booked for next week. I

feel you have to push these doctors to get referrals. I really want to

see an immunologist, one who will support my son after the surgery just

in case it does not help with the fevers.

My husband and I are prepared to fly to land or Boston's Children's

Hospt. if we don't get help here!

[Guest guest]

Hi

We live in Alliston which is just South of Barrie and my Family dr is

in Toronto (Keele and Finch) area and was very reluctant to refer me

to a pediatrician in the first place because he seems to think that

my son only has random viruses. I am a nurse and I work at CCAC and I

did my own research and sought out my own pediatrician in Barrie and

then convinced my family dr's secretary to please make the referral

and then she was able to get him to sign the paper and then she faxed

it to the pediatrician. We then went to the pediatrician where i

brought forth my concern regarding and she finally knew what it

was and was agreeing with me the the frequent fevers in Tyson were

not normal. We just went for blood work last week and I have a appt

with the pediatrician on 10 Dec. I really just want answers.

What is the name of your rheum?

Good luck

Tonya

[Guest guest]

Tonya, my rheum is Dr. Lyn Speigal. She is a Sick Kids Doctor but her

office is across from York Central H. in Richmond Hill. I had to

fight a walk in doctor to give me referral to her. Be forceful. TELL

your doctor you want to see her. Now, she will tell you right away if

she thinks it is . She saw my calendar and was conviced. She did

not say a T & A was the first thing we should do. She presrcibed

Cimetidine-the anitacid. She said 300mg two times daily. This seems

excessive. Nonetheless, I told her straight out I would not do this.

We had also been to an ENT and he was not familiar with but he

did book an T & A for Dec. 3rd. (Yes, we are scheduled for this

Wednesday!!!!we;are crossing our fingers) So, I went back to the

rheum and told we were opting for the surgery. She said it was our

choice. Very Very nice doctor, kind and gentle and knows alot about

the disorder. She has heard Dr. Kastner speak very often at Sick Kids

if he visits. She is also aware that this disorder is common in

Isreal. She often brings that up.

Tonya, I don't know how long you have been battling this but what I

will tell you is that you have to tell the doctor what you want to

see happening. There is not enough info/experience regarding this

disorder out there. We actually know more than these doctors just by

being part of this support group. We hear all the first hand data!

I asked the rheum about taking cimetine after the surgery if it

doesn't work. She said absolutley! So, we have options after surgery.

She did not actually book the T & A for us-I don't know if she will do

that for you. I am sure she can. How old is your child?? That is def.

a factor in the decision. She wants to see us 6 weeks after surgery

to see what has happened.

Oh, she also took blood work without fevers and then again in a fever

episode. This helped her identify inflammation levels in Lucas' body.

She also noted that he may have had strep in the past that went

unnoticed because there was a high level of a strep antibody in his

blood. She believes the surgery will be beneficial.

I hope this helps. Keep me posted. Email me at

sandra.sardone@... with any other questions!!!!

(mother of Lucas-6 fevering 8 months)