Re:Pushing for all the care you can get!

[Guest guest]

Darn, I thought our children had something in common. Gabe only complains

about his eyes hurting when he is in the sun. His bumps are only on his back

and they are always red and raised about an 1 " apart. Gabe's mouth sores

don't bother him to much either. Poor thing is used to them now he gets them

every month for about 2 weeks

It was nice talking to you and good luck with and a diagnosis. We are

now going to see a Rhemotologist at Stanford, (we seen infectious disease at

both Kaiser and Stanford) if she does not come up with anything we are going

to take a break with all this testing and let my son try and live like a

healthy boy.

You have my support,

[Guest guest]

Hi ,

I am sorry you are having a hard time with your doctor- it's

difficult to have a doctor that you feel doesn't believe you. A few

months before my son was diagnosed, he got very sick, ended up

having mono too, (he was 18 months) and his doc was on vacation. I

absolutely loved the doctor on call, and ended up switching to him

for the simple fact that he was willing to start looking into what

may be wrong with him. He looked over his history of recurrent ear

infections, sore throats, and fevers and started doing some tests.

He was a relatively new doctor. Ended up leaving the practice a few

months later, and we had to switch back to the regular doctor, who

said that she had suspected possible several months ago, but

then we had switched... she then asked me outright why I switched

and I told her that I felt I was getting nowhere, that she didn't

take my concerns seriously, and taht this other doctor did. Since

then she has been much better, still has a rather abrupt bedside

manner but I feel she is a good doctor. But in the beginning, I

felt she treated me like an overreacting mother. Hopefully now that

you had an open discussion with your doctor, he will respect you and

treat you better.

Good luck,

mom to Drew, age 3 (next week!)

town, RI

[Guest guest]

Hi Charyn,

My son has light sensitivity. In the summer he does not want to play

outside until evening. He does not complain of any shooting pains though. His

rashes are red and raised but not crusty and always on his back. Do you think

it can still be TRAPS? Also what kind of stomach pains are they? Cramps,

more luck flu pains or gas pains? He gets stomach pains occasionally thought

it

was gas. Also his fevers are not every month, the doctors don't think it is

because of that reason. His last fever of 104 was in April (knock on

wood). But he does get mouth sores every month. Does your son get fevers

every month. I've tried to push for genetic testing but seem to get brushed

off.

We see doctor Hertz through the Kaiser system,someone on this board

recommended him he is GREAT but did not know what I was talking about with the

genetic testing, he told me all blood tests are genetic. Do you think that I

should push for the genetic testing at the Genx lab (is that what it is

called)?

I did not really push it because I looked up on TRAPS and it seemed that my

son did not get the typical symptoms. We are now going to see a

Rhemitologist (SP)at Standford Dr Sandborg. Do you think I should

mention TRAPS

to her?

Thanks for the info

[Guest guest]

and ,

Rashes are common in many of the genetic fever disorders, but eye

involvement is a feature that distinguishes TRAPS from the others,

along with a migratory nature of rashes. Most common is a macular

patch with crusting in the center, usually on the limbs or torso, or

a rash on the face, neck torso and upper extremities.

Kenny began experiencing periodic light sensitivity and eye pain

when he was 2. The summer of 2003, he suddenly started covering his

eyes and complaining that the sunlight hurt his eyes -- if he went

outside or if the sunlight came in through the blinds -- and he

would scream in pain if the Ped shined a light in his eyes during

exam. That summer, he started using sunglasses and many days he

stayed indoors when the sun was bright. Since then, he complains

about the light sporadically.

He also experiences sporadic shooting pain in his eyes, which come

on quite suddenly. He will be sitting, and then suddenly scream and

cover his hand over his eye. It often happened at night, when the

lights were off.

He had a rash of raised bumps when he was younger, before he was

diagnosed with TRAPS, that we thought was a heat rash (?). He has

had only one patch on his leg, a 1 " red circle with crust in the

center.

Have your children been tested for TRAPS? Do they have stomahc

pain, which is also present in most children with TRAPS?

Charyn, mom to Kenny, 4

Brooklyn, NY

[Guest guest]

Hi Charyn,

It’s so good to hear from you, I was going to ask you a lot of questions on

the Tn-receptor site, but didn’t want to seem like a pest. at about two

would complain of pain when I would hold her hand. She would cry and I would

feel like a criminal, so I started holding her around the wrist when in

parking lots ect. She has had severe joint pain. We saw a rheumatologist,

but there was no joint pain that day, just laughed through the exam, so

she told me was fine. (she was not nice to me at all) And as I pay more

attention the shooting eye pain tends to almost always be her right eye. I’m

finding the joint and eye pain are not only when she is fevering anymore,

but will pop up sporadically through the month.

I’ve ordered the buccal swabs from GeneDx and when my pediatrician was aware

of how serious I was (I was going to self pay) he said he would investigate

other options and that I was to hold onto my purse for now. I was going to

do the TRAPS testing first. Our local fever board at the children’s hosp

have no experience with TRAPS only HIDS, and they have no interest in

at all. My pediatrician told me he didn’t have time to research fever

disorders and that I know more than him, so as long as I don’t ask for

anything crazy I should direct the care. YIKES!!! This was in the same

conversation that he told me he suspected me of Munchausens, for which he

did not apologize. Seems odd to me to have a potentially disturbed person

direct care of anything? I don’t know what to think.

Thanks for sharing your experience and support.

Walton

Re:Pushing for all the care you can get!

and ,

Rashes are common in many of the genetic fever disorders, but eye

involvement is a feature that distinguishes TRAPS from the others,

along with a migratory nature of rashes. Most common is a macular

patch with crusting in the center, usually on the limbs or torso, or

a rash on the face, neck torso and upper extremities.

Kenny began experiencing periodic light sensitivity and eye pain

when he was 2. The summer of 2003, he suddenly started covering his

eyes and complaining that the sunlight hurt his eyes -- if he went

outside or if the sunlight came in through the blinds -- and he

would scream in pain if the Ped shined a light in his eyes during

exam. That summer, he started using sunglasses and many days he

stayed indoors when the sun was bright. Since then, he complains

about the light sporadically.

He also experiences sporadic shooting pain in his eyes, which come

on quite suddenly. He will be sitting, and then suddenly scream and

cover his hand over his eye. It often happened at night, when the

lights were off.

He had a rash of raised bumps when he was younger, before he was

diagnosed with TRAPS, that we thought was a heat rash (?). He has

had only one patch on his leg, a 1 " red circle with crust in the

center.

Have your children been tested for TRAPS? Do they have stomahc

pain, which is also present in most children with TRAPS?

Charyn, mom to Kenny, 4

Brooklyn, NY