Re: Hello Again & Children's Hospital Boston Walk

[Guest guest]

HI ! It !!!!!!! We have done the walk for several years! We will

be unable to walk this year due to a huge event in my home! My oldest is

graduating from High School!

Do I read your post right???? Is your youngest fevering also Have you been

back to NIH since we met? As you have read Breana and I continue to fly done

and she is on Kineret, Singulair, Naproxen and doing OK. Still has flares but

quality of life is so much better than it has been...so we will take what we

got!

How exciting back to school!

[Guest guest]

HI ! It !!!!!!! We have done the walk for several years! We will

be unable to walk this year due to a huge event in my home! My oldest is

graduating from High School!

Do I read your post right???? Is your youngest fevering also Have you been

back to NIH since we met? As you have read Breana and I continue to fly done

and she is on Kineret, Singulair, Naproxen and doing OK. Still has flares but

quality of life is so much better than it has been...so we will take what we

got!

How exciting back to school!

[Guest guest]

Hi !

 

It's great to hear from you!  How is everything?  I'm so glad to hear Breana

is doing well.  We've not been back to NIH since last August.  I had to cancel

our 6 month visit because Todd was unable to come with me.  Rescheduling has

been tough now that we have 3 patients who need appointments at the same time! 

They are great as always down there and do keep in close touch with us.  While

we were in NC we were going to NIH every 3 months.  When we moved up to RI we

started going every 6 months.  We are also seeing

 

and both tried singulair last year.  It took the fevers away for

the most part but both experienced such severe side effects that we took them

off.   I'm still hoping to find something that works. Adam started fevering at 8

months old (just like the other boys).  He will turn 2 in June! We've not tried

any meds with him yet other than Motrin/Tylenol.

 

How exciting that your oldest is graduating!  We'll miss you at the walk.  I'd

love to catch up sometime.  Give me call maybe we can get together.

 

 

 Support us in our Walk for Children!

Please visit our team page to learn about WHY WE WALK and to DONATE!

http://howtohelp.childrenshospital.org/walk/pfp/?ID=KJ0044

THANK YOU FOR YOUR SUPPORT! 

[Guest guest]

Hi !

 

It's great to hear from you!  How is everything?  I'm so glad to hear Breana

is doing well.  We've not been back to NIH since last August.  I had to cancel

our 6 month visit because Todd was unable to come with me.  Rescheduling has

been tough now that we have 3 patients who need appointments at the same time! 

They are great as always down there and do keep in close touch with us.  While

we were in NC we were going to NIH every 3 months.  When we moved up to RI we

started going every 6 months.  We are also seeing

 

and both tried singulair last year.  It took the fevers away for

the most part but both experienced such severe side effects that we took them

off.   I'm still hoping to find something that works. Adam started fevering at 8

months old (just like the other boys).  He will turn 2 in June! We've not tried

any meds with him yet other than Motrin/Tylenol.

 

How exciting that your oldest is graduating!  We'll miss you at the walk.  I'd

love to catch up sometime.  Give me call maybe we can get together.

 

 

 Support us in our Walk for Children!

Please visit our team page to learn about WHY WE WALK and to DONATE!

http://howtohelp.childrenshospital.org/walk/pfp/?ID=KJ0044

THANK YOU FOR YOUR SUPPORT! 

[Guest guest]

,

I would love to hear from you about the severe side effect that your

boys were experiencing that made you take them off of singulair. My

son started singulair two weeks ago for a severe allergic/asthma

attack to pollen and I am so curious. He fevered two days after the

attack and then fevered again last night. I'm sure the fist one was

PFS, but last night seemed more like a cold coming in...so

strange...his second cold in his whole life!?! Who knows. I'd love

to hear from you or anyone with experience with Singulair.

Pam Mattox

lin, Tennessee

Mom to 5 (Periodic fevers)

[Guest guest]

Just as an fyi on our use of Singulair. Our 2.5 year old son has been using

Singulair since last August and has had no negative side effects. I do believe

there are others on this site that have not had negative side effects.

Regards,

[Guest guest]

Just as an fyi on our use of Singulair. Our 2.5 year old son has been using

Singulair since last August and has had no negative side effects. I do believe

there are others on this site that have not had negative side effects.

Regards,

[Guest guest]

Just as an fyi on our use of Singulair. Our 2.5 year old son has been using

Singulair since last August and has had no negative side effects. I do believe

there are others on this site that have not had negative side effects.

Regards,

[Guest guest]

Hi Pam,

was on Singulair for 8 months, was on for 6 months. In

both we saw dramatic decrease in frequency of fevers. That was

wonderful. Unfortunately, experienced severe depression. It

seemed to get worse the longer he was on it. He would sob all the

time, didn't want to play, was very hard on himself and just overall

depressed. on the other hand was very confused. He would get

dizzy often and the teachers would ask me if he was feeling ok or was

due for an episode because he would just space out. Sometimes in the

middle of a task/activity he'd stop and say that he didn't remember

what he was doing. And he seriously didn't know. At school he fell

out of his chair a couple times and they reported that he would be

running outside and just fall. We kind of brushed off a lot of these

reports and things we saw until he passed out eating breakfast. We

realized later that he had a seizure. After some research we found

that these issues were all related to the singulair.

We stopped the medicine in both boys and didn't tell the school. In

about a week teachers from both classes asked me if we changed

anything with the boys. was his old happy self again and

was too. We stopped in October. is happy and confident again

as before. has not had any other seizures or

dizziness/confusion.

I understand that the FDA is not revisiting the side effects of

singulair for kids. Our pediatrician told me that she has seen

children with behavior changes who are on it for asthma. I think

with ANY medicine and children you should pay close attention to the

differences and changes you see in your child (regardless of what the

label says). If it's working for your or your child and there are no

side effects I wouldn't stop it. But i think it's important for

parents to know what others experience so that we can keep watch -

especially when we are giving these meds to small children who may

not be able to express themselves fully.