Dr Appt Update

[mlmccoy99]

Took Lyssa into the dermatologist for a follow up today. it went went ok i guess. i don't have psoriasis. never have had it. i don't know what to do,
what to expect. i need someone, preferably a DOCTOR to tell me the next course of action if the current one isnt working (isnt that why we pay them?) She starts spewing off all these options...we can do this, or theres this, or this is another thing we could try. im like, i need someone to tell me whats the best. i don't know what im looking at. she looks at it everday. is she a severe case? is she mild? so, what she reccomended is to continue the tanning bed (since that seems to be the only think working at this point even though she doesnt like it much, it is working) for 6 weeks. continue with the current topicals and she gave a script for new topicals, but its the tar
ointments which are very messy. we gotta do those at night. and the current ones in the morning. got a foam med for her head, use the current one at night, the foam in the morning, its ok to stay in there all day without washing it out......um.....shes gonna write a letter to the insurance requesting approval for a home phototherapy unit...she doubts it will get approved. the insurance companies don't care that you live an hour away from the dr or that your copayment is $30 or that this 7 year old is IN SCHOOL. its cheaper for them if the patient goes into the office for phototherapy treatments. she was gonna write it up for us and see what she could do. shes gonna mail me some info on MTX and also for Enbrel. Thats her next reccomendation if this stuff doesnt work. Try the MTX first, then if no results, move on to Enbrel, if we cant get the insurance company to approve that, she says its really expensive. So, right now I'm hoping for the approval for the light unit being that the the only thing that seems to be working so far is the tanning beds. Shes only going in for 3 minutes every other day and shes part Cherokee indian so she has never ever been sunburned. They even give us a sticker to put in her when we go in, and shes not even gettin tanned from the beds. Its just more hurry up and wait and see if this set of treatments works :) I guess thats what psoriasis is all about. hurrying up to wait. Anyone got some patience they want to share? :) Have a good thursday!

[jennab711]

You are so right about it all, mostly, if you find a dr that truly cares, the insurance company could give a dam. Your poor little girl. I cannot even imagine. Unfortunatly, we are bound by the insurance company. My derm once told me there are steps in getting treatment as far as insurance goes. First creams/ointments. 2nd light therapy. the if that does not work, pills. then enbrel. You are also right on about-hurry up and wait. I know how my almost-7-year-old reacts to waiting. Torture. Pure torture. Good luck in all that you do to help her. Unfortunately, this is one you cannot fix for her right away. On the plus side, not that there is one at all, your daughter will learn at an importaint age about tolerance and understanding. I used my disease to teach my daughter about peoples flaws. And how importaint it is to be sensitive to others who do not look like she does. I think it helped a lot, seeing me and my disease. Best of luck, lots of hugs & love you's to your child...........Jen

[Photochick66]

aww im sorry about this all happening, i hope things get better for you and your daughter! i really hope you find somthing that works or ya. i was recentaly at a meeting (thursday) and they were talking about how mtx just kills your liver (i think thats wat it was..) and its not to good for ya. i know it was origonally a cancer med. but then we found out bout the t cells and how the mtx helps get rid of em. i hope that u find somthing..whether its mtx, phototherapy, or enbrel, i wish you and your daughter the best of luck. i bet she is pretty amazing, i mean having to deal with all this. hope it gets better soon!
x0x
Nemo

[SandraJean]

Hi,

I'm so sorry to hear about your little daughter and all she is going thru (and you too!). It can be so frustrating, not only for the patient, but the caregivers too. I do hope you are able to find the right treatment for her and get the help she needs. There are a few other parents with their children having psoriasis also. They may be on in a little while.

One thing that might help with the insurance is that the National Psoriasis Foundation helps people with their insurance companies in fighting to get approval for specific psoriasis mediations and therapy. If you go on the front pages of this web site their is information on the advocacy help that the NPF will help you with. Hopefully some of this information will help you and your little girl.

Take care,

Sandy

[PJ Leary]

Hi,

Mike rang me up to get me over here to talk to you, so I'd better do as he says!Seriously, I understand that this is a very difficult time for both you and your daughter. As parents we are always worried when our child is sick, and even more so when the thought is there that this could last a long time.

My name is PJ, and I've had psoriasis for about 30 years. I am also a mother of four children, two of them with mild psoriasis. I was way ahead when my children got it because I knew what it was, and I was already an informed patient. So, here's what I know to tell you right off the bat.

1. Don't panic.

2. Get your daughter tested for strep immediately. Insist that the Dr grow out a culture. Then get her on an aggressive course of antibiotics. When she has finished the course, have her re-tested. If she's still positive for strep, post back here and let us know. No treatments for the skin will work if she has a strep infection, and she may not have any of the usual symptoms.

3. Be dilligent about doing the treatments. Use only as much topical medication as she needs, and only on affected skin, not on clear skin. I know from experience that when there are a lot of small spots this can take an hour. It is important.

4. If you don't get approval from the insurance company for a home UVB unit, please get in touch with the Foundation and they can help you locate a used unit. ( They cost a fraction of what new ones do ). Let's hope that the UV will do the trick.

5. I would strongly caution against the use of mtx if it can be avoided.

6. Enbrel is approved for use in children, and would be my own choice for my child. Enbrel can be safely used in what we call "combination "therapy, for instance, with UV light and topicals.

7. Be very certain that your child wears protective goggles made for UV therapy AND closes her eyes during every single treatment.

8. If you get to the point where your child needs a medication like enbrel and you can't afford it, or the co-pay is too high, we can help you with resources we know of that will help you get reduced cost or even free medicine. Just ask, dear.

9. Keep coming here and reading and asking questions, we will all help.

[MikeK]

Hi Meghan,

I agree with all of the great advice that you've gotten thus far. I'm glad the tanning bed is helping. Don't give up without a fight if your insurance company denies approval for a home light unit. File an appeal and give the NPF a call. They have an insurance advocacy service that tries to help people obtain coverage for things like home light units. Here's a link to a thread that describes how the NPF assisted one family get coverage for a home light unit: http://www.psoriasis.org/forum/showthread.php?t=5155. And, here's a link to the NPF's contact information: http://www.psoriasis.org/contact/.

I hope this helps.

Mike

[mlmccoy99]

As far as the strep test goes, 6 weeks ago, after the first visit to this dermatologist, she ordered lab work from labcorp for a strep test. They thought she might be a carrier and not showing any symptoms. So, they took blood for the test and it came back negative. Are you saying that blood work is not enough to test for strep?
I am also taking her back to the dentist because about 2 months before this outbreak she did have an abcessed tooth and had a root canal done. The dermatologist wants to make sure that they got all of the abcess out and that thats not whats causing this. I don't have dental insurance and the last visit to the dentist cost me $800.
They did put her on a broader range antibiotic, Keflex. Even though her strep test came negative last time, they still had me giving her amoxicillan. It didnt clear anything up so she wanted a stronger one this time. They were going to give her rithromycen (sp?) but that one makes her extremely violently ill. (she took it when she was little and having a horrible bout with ear infections).
Thanks for all the support. I sure wish there was a support group around my area. But you guys have helped out alot. Thanks for the reccomendation against the MTX. Thats the kind of thing I need to know being that I have never dealt with this stuff before. I dont know whats what.