P&PT request for my DD#1

[bubbaray]

I'm (working?!) at home today, anxiously awaiting some test results from Children's. DD#1 was diagnosed with HSP in April, and has had 2 different diagnoses since then. She's getting worse, not better. She's 4, hasn't napped in the morning in over 2 years and asked to take a nap this morning at 8:30am. She's so pale, her skin's almost transluscent, losing her hair, etc.

We're quite concerned and I think the pediatrician this morning was too (as was my/her GP yesterday).

So, if you wouldn't mind keeping my DD#1 in your thoughts and prayers, I'd really appreciate it. Thanks!

[kijip]

Done! Lots of prayers for her and your whole family. :hug:

[citymama]

Hugs to you and her! I hope you are able to get an accurate diagnosis and treatment started ASAP, and that she gets well soon. Sending good thoughts your way.

[elephantmeg]

hugs to all of you, and praying...

[randomkid]

Will be thinking of you and keeping your DD and family in my prayers. Please let us know if you find out anything definite.

[MMEand1]

We just went through HSP in April/May and spent a week in the hospital. My DS just had labs done yesterday for a follow up and his SED rate was super elevated, so I know where you are coming from. Good luck and feel free to PM me if you would like.

Hopefully they can figure out what is going on...{{{Hugs}}}

[niccig]

I hope they can figure it out soon. Hugs to you and your DD.

[ha98ed14]

P&PTfor your DD! I admire you so much. What a strong mom and woman you are with everything you balance and on top of it all, you have given me so much advice and support! Sending hugs and well wishes to your whole family!

[brittone2]

I'm so sorry that she's going through this. Your family will be in my thoughts.

[kristenk]

P&PT for your DD. I hope you hear good news soon.

[Pennylane]

Keeping you all in my thoughts and hoping for some good news.

Ann

[buddyleebaby]

I said a prayer for a proper diagnosis and quick healing.

Hugs to you.

[bubbaray]

Thank you soooooo much for your kind words!

I just heard from the dr. (which in and of itself is rare, dr's here don't phone with test results unless there's a problem) -- all her bloodwork and urine tests came back normal. Its not leukemia, her blood chemistry is fine, her thyroid is fine, she's not anemic, they did a sedimentation test (?) and its not viral. I can't remember all the tests he rattled off, but they did a lot of them.

He's upgraded our referral to the head of dermatology at Childrens to urgent and hopefully we'll be in there soon. He doesn't think its HSP anymore, but a benign condition called pityriasis rosea, which is what the 2nd diagnosis was. But, he's not sure about even that and said it could be just a strange post-viral rash. He said he's seen a few cases of that this spring.

The other thing he said was that he's put through a referral to the head of the allergy clinic at Childrens b/c he thinks that DD#1's malaise, fatigue, paleness, etc are allergy-related. That was my thinking. He's pretty sure the rash is not allergies, though, b/c its not hives. He's completely unsure about the hair loss.

So, there you have it. We don't know *what* it is, but we know what its *not*. I guess I'm relieved (esp. about the leukemia part). Kinda ironic, the dermatologist and allergist DD#1 will be seeing we already know -- DD#2 goes to them! Maybe we get a family discount? J/K.

I just finished painting her nails. So, she's happy! :)

[elizabethkott]

So glad you heard back from the doctor.
Here's some more positive vibes and good thoughts that everything is properly diagnosed, and that she starts feeling better soon!!!

[Tammy]

Keeping her in my thoughts and prayers. Glad to hear the good news so far. My dd had HSP earlier this year and it was scary.

[mama2g03]

Sending P & PT and big hugs to you and your DD. I'm glad you got good news on the testing done and I hope things continue to be very positive. I know it must be hard waiting for a diagnosis. I hope you get some answers soon.

[MamaMolly]

P and PT are on the way! And a big old hug too!

[Mamma2004]

I am delighted to read your update and will continue to pray for you and your DD. May the good news continue!

[ThreeofUs]

Melissa, I was so happy to see your update! I'm still sending P&PT's, but with some relief and great thankfulness that your DD is not going down that road.

Good luck with getting the right diagnosis, and may your allergies (if that's what this is) clear up very soon.

[Wife_and_mommy]

P/pt that DD1 will get a correct diagnosis.:hug:

[WatchingThemGrow]

Absolutely I'll be praying for her!

[SAHMIL]

I'm sorry to hear this sad news. I will say a prayer for her and your family. May God give you strength through this.

[purpleeyes]

We are thinking of you and your family. Hope you get good news soon.

[gatorsmom]

I'm saying prayers for you and your daughter. I had pityriasis rosea 8 years ago. Although it looked pitiful for about 4 months it didn't bother me and it has never come back. Hopefully that's all your daughter has. Lots of p and pts coming your way.

[bubbaray]

I had pityriasis rosea 8 years ago. Although it looked pitiful for about 4 months it didn't bother me and it has never come back.


Thanks everyone!

I'm actually not convinced is this piyriasis rosea either, b/c everything I've read indicates it is "just" a rash and isn't bothersome. DD#1's rash is both itchy and painful. And, when the rash clears, it leaves a bruise (which is more like HSP). A perfectly round bruise. NOT a "all young kids have bruises" bruise (which is what another dr said at her last visit to Childrens). The rash is also only from the waist down (again, HSP symptom) and she is complaining of joint pain (HSP).

I dunno. I'm not a very trusting person (!), but I liked the Dr today and I think he was at least forthright with me about what he thought it might be, what the tests showed it wasn't (for which I will be eternally grateful) and what he just didn't have a clue about (hairloss).

This dr also had no qualms whatsoever referring me on to the specialists of my preference. Yeah, I'm cherry picking, but honestly, I've been round and round this @W#$^^ merry-go-round between this and DD#2's eczema and anaphylaxis. I'm starting to figure out how Children's works. Once you're in the system, you're golden, as long as you know who to ask for. And, I'm finding out, the nurses (even in the clinics) are an AMAZING resource! :)

I truly want to thank each of you for your kindness and P&PT. I really means the world to me at a time when I am stressed beyond reason. Thank you all.

[TahliasMom]

hugs to you and your family.

[shilo]

i'm sending lots of positive thoughts your way, both for answers and relief.

i'm also sending easy navigation thru the maze that is children's hospitals vibes. knowing who to ask for and how the system works really is a HUGE part of the puzzle.

hoping for more good news for you soon,
lori

[chlobo]

Prayers heading your way.

[sidmand]

We'll keep thinking good thoughts for you and your family...

[karolyp]

I'm praying for your little one and for you. I hope you get answers soon.

[boolady]

P&PT coming your way. I hope DD feels better very soon.

[Fairy]

Sending positive vibes. so sorry DD is going thru this, poor chickie.

[KrisM]

I hope you get a correct diagnosis soon! How frustrating.

I'll keep you and her in my thoughts.

[KBecks]

How scary. I hope she feels better soon.

[npace19147]

good luck - hope all goes well!

[MontrealMum]

Glad to hear the problem is not as scary as you were originally led to believe. Sending P&PT your way, and hoping you get an accurate diagnosis soon! And for your DD: :hug:

[candybomiller]

Just saw this thread Melissa. Sending mucho prayers and positive thoughts to you and Sarah. I hope the specialists are able to figure out what's going on and heal her. Big hugs to you both.

[eliasmom]

P&PT for answers and relief for your DD!

[JTsMom]

P&PT for your DD and your family. :hug: Hope she feels much better soon.

[SnuggleBuggles]

I'm glad round one of results took away a big fear for you. I hope they figure things out soon!

Beth

[Melbel]

You and your sweet girl are in my thoughts and prayers. Your DD is fortunate that she has such a strong advocate! I hope that you receive the answers you are seeking so that your DD can receive proper treatment.

[wencit]

Aw, Melissa, hugs to your DD! I hope you get a clear answer soon!

[bubbaray]

Thanks everyone!

Well, I had to call and call and call the dermatology clinic today (hello, redial button my new friend). They claim the "replacement" booking clerk was to call me last week. Um, yeah, what-ev-er. I didn't get a call on any of the three numbers I gave them (home, work, cell) and neither did DH.

Anyway, DD#1 goes to the head of dermatology at Children's on July 4 (not a holiday here). And, we're on the cancellation list in the meantime.

Baby steps....

[npace19147]

Good for you for being so persistent, it is not fun but so necessary in any health system. Hope the situation improves in the meantime, hugs to you!

[mudder17]

How scary Melissa! Good for you for persistence. I will say a prayer for your DD's diagnosis and recovery and for you for strength and peace during this diffi