RE: Skipped or delayed episode?

[Guest guest]

On the rare occasion our son did get a normal virus it would cause him to skip

his episode, but also it would tend to make the next episode more severe.  Tyler

fevered every 2 weeks from the age of 3 months until he was 2 years and 8 months

old when his tonsils were removed.  So far he has had 4.5 months of a break from

the fevers (11 episodes).  He would sometimes go for 3 weeks without an episode

and no other symptoms of a normal virus and then he would have a 1 weeker that

was very severe.

 

We also started out in a small town (in CA) with a pediatrician who new nothing

of and kept telling us the high 105-106 fevers were just virus exposure. 

We finally found a Doctor who came 3 times a week to a neighboring town 45

minutes away (his practice was actually an hour and a half away).  He knew about

, but had limited knowledge.

 

We were referred to the Children's Hospital in San Francisco and they were the

one's that gave the diagnosis after ordering DNA testing and a few more blood

draws.

 

It seems that the specialists at the Children's Hospitals usually know more

about , but then it depends on if you see an Infectious Disease Doc or a

Rheumatologist on how your childs symptoms and treatment will be addressed (they

both approach it differently).

 

They really need to make an online support for Doctor's to communicate for

situations like this.  I mean, if we as average joe's can come together to learn

more, they should be able to also.  Especially with the internet today, it

frustrates me how little they know or are willing to learn about.  I would think

after the study done on the success of T & A on and the article in the

Washington Post, that there would be a ' buzz ' in the MD community about

.....

 

Anyway, I wish you and Kurtis the best of luck, it is a hard road to go down.

 

Pruden

Tyler Pruden 3yrs old, fevered since 3mo, T & A Aug 5,2008, fever free so far

Dylan Pruden 9 months

Vancouver WA

[Guest guest]

Hi, I just wanted to let you know that we live in Pa. as well. I would HIGHLY

suggest you try Hershey Medical Center. We saw a rheumatologist there and she

was awesome. We didn't have such luck at CHOP where we saw an infectious

disease doctor. Please feel free to email me if I can be of any help. Thanks.

Jenn

[Guest guest]

Hi there

I am not sure where you are at in central PA but I am in Lancaster county. My

daughter has had great experiences with a pediatric rheumatologist at Hershey

Medical Center. His name is Dr. Groh. I know he is busy but he has told me he

has seen around 50 (I think) kids with a periodic fever syndrome. He is very

knowledgable and kind. If you need any other help - just contact me off the list

via email and I would be glad to give you my number and fill you in. My daughter

has been seeing him for over 2 years now and started fevering before her first

birthday. She is now 4. She has been doing well with medication (no T & A) and

fever free for about a year.

Good luck and let me know if you need anything else from this neck of the woods.

Lori Rodgers

Mom to four girls including (4)

[Guest guest]

Hi Lori

What medication is your daughter taking?

Thank you

Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

Hi

My daughter is around 40 pounds and takes a 5mg tablet of Singulair. She has

been on it for a while and we have seen no side effects. We have had a few break

through fevers but a small increase in dosage took care of that. She has been

doing great for almost a year with no fevers at all. She still gets occasional

joint pains but not severe. She had all the genetic testing done and all were

negative. Her rheumatologist reluctantly said but thinks there is

something else up there possibly that hasn't been identified yet because of her

symptoms. Our doctor has mentioned to us that maybe we can try to stop the

Singulair and see what happens. I told him I have to be ready first I think

most of the folks on here would understand that! I hope that helps.

Good luck

Lori Rodgers

mom to four girls including (4)

[Guest guest]

Hi Lori

Thanks so much for the information. My son also takes Singulair and although he

is still fevering, his episodes are much less severe. I will speak to our

specialists about increasing the dosage.

Thanks so much.

Sent on the TELUS Mobility network with BlackBerry

[Guest guest]

I haven't checked the group in awhile. My daughters fevers for some

reason have started to become further apart and very short. We have

been dealing with since she was 1 and is now 3..... we did all

the meds and genetic testing (negative).... but nothing helped... we

were about to do the T & A, but our doctor convinced us to wait just a

few more months..... and to our surprise things are so much

better..... she is not cured and the fevers haven't stopped but they

have been coming 7 weeks apart and only lasting a day or so..... OUR

Family can deal with that!!! They used to come every few weeks

(sometimes every two weeks) and last for up to 7 days!!! It was

awful.... Other people on here have said that sometimes their kid gets

breaks and then the fevers come back worse then ever..... so I " M

PREYING and Hoping that this is not the case!!!! And that she is

really out growing ....(my doctor thinks she is)Anyway I wish the

best to everyone dealing with this.... It is a very hard thing for the

kids and parents!!!!! And I hope that I can report back that the

fevers are slowly going away!!!!

Hali

mom to Sky (almost 3, fevers since 1 year old)

[Guest guest]

Is singular proven to work? I have not heard of this treatment??

 

Amy

[Guest guest]

Hi

Singulair has been working for some, not for others. I believe they have used it

at the NIH. I know my daughter's doctor has prescribed it to others with

positive results. I have heard of some where it works for a while and then stops

working. I hope that helps. I am sorry I don't have any research to back it up,

all I know is what has worked for us.

Good Luck!!

Lori Rodgers

mom to four daughters including Sam (4)

[Guest guest]

Hi Janine. I was searching the group site for croup and came across

your post. My daughter is due for a fever also so I am wondering

what happened with your little one. Did he get his fever after the

croup cleared up?

Also did you get a diagnosis yet? We are also still waiting for a

diagnosis.

mom to emma(10mos), fevering since 9 weeks of age

[Guest guest]

Hi Janine. I was searching the group site for croup and came across

your post. My daughter is due for a fever also so I am wondering

what happened with your little one. Did he get his fever after the

croup cleared up?

Also did you get a diagnosis yet? We are also still waiting for a

diagnosis.

mom to emma(10mos), fevering since 9 weeks of age