Mom of newly diagnosed adolescent - hi, all

[whatthewhat]

Some things just leave you speechless, and some things, at least in our family, call for humor as a coping skill. I mean no disrespect by choosing a username from a quote from "30Rock" - but "what the what?" summed up both the speechlessness and the unbelievability of what a turn our lives have taken.

A year ago my daughter had growing pains and runny nose. Two months ago my daughter had growing pains that had gotten a lot worse, wouldn't let up in fact, and there were some big chunks of some godawful things coming out of her nose every couple of days. 6 weeks ago she was having trouble swallowing, her stomach was in a lot of pain, her joints had started to swell, she was developing rashes all over (ears, nose, mouth, fingers, legs, feet, top to toe), she was clearly losing more weight than a normal growth spurt would indicate, and still had that weird nose thing. The rash prompted testing by pediatrician who first looked into hand-foot-mouth possibility, but with blood work began to suspect Henoch-Shonlein Purpura, then JRA, and then just vasculitis of some sort. The pediatrician moved heaven and earth and got my daughter into Children's Hospital of Los Angeles, with the rheum team there, with a hemoglobin count of 5 and a SED rate of 90. Days of testing and exams and we then got a diagnosis through biopsy of GPA.

Our daughter has no kidney involvement, but does have lung nodules, skin involvement, sinus stuff. She has responded very well to medication (ongoing prednisone & methatrexate along with their entourages of vitamins etc, and two infusions of retuximab.) (Not bothering to check spelling; all y'all know what I mean!) She's also doing some physical therapy to deal with neurapathy in one of her feet.

During the last few weeks I have been reading through the messages here, and learning a lot, so thank you, to those voices I have already come to be familiar with. (In fact, I can guess at ex-act-ly what a couple of you are gonna say in a welcoming message to me :-) In thiss time of such deep foundation-shifting, it is a comfort to be able to predict some things!)

That's all for now. Truly, thanks, everyone.

[pberggren1]

Sounds like your daughter has good docs. At least you are at a big center. With Wegs that is important. Please keep us posted on her progress. And feel free to ask any questions you like. We are here for you......just a big family.

[Debbie C]

Wow..whatthewhat sums it up !!How old is your daughter ? I feel bad she has to go thru this but happy they figured out what is was before it got worse. Hope she starts to feel better soon. If you ever have any questions or just need to vent ..we are all here.

[mishb]

Welcome mom of adolescent child :biggrin1: Gosh they can be handful without all of these new problems. :scared:

I'm glad you have been reading on here and I hope you ask lots of questions from this wacky bunch......they are a wonderful bunch really.

All the best of wishes to your daughter and I hope things improve for her shortly.

[Dirty Don]

Welcome wtw! So sorry about your daughter's dx...I hate seeing children & young adults having to deal with this...but sounds like she has an excellent support system. Please ask any & all questions on here...good info & caring people. Best to you both.

[annekat]

Another welcome from me, WTW! But I'm so sorry you had to come here, as it is always especially sad to hear of a very young person going through this. We can only hope that she will respond to treatment as well as many of us on here have, and will eventually go into remission and be able to live the life that you and she had envisioned! In the meantime, we are all here for you and for her. This forum is the best place you could possibly have come to get answers, information, and support. Please keep us posted!

[whatthewhat]

Thank you so much everyone. To answer - she will be 15 this summer. To reply - yes, they can be a emotional and ravenously hungry and ???, even without all this added on... She and I have joked "It's the meds!" Thankfully we are a close family and have been able to communicate okay throughout this.

To fill in - she had never been to a hospital or e.r. before (except as a baby to welcome her younger brother.) She had never had a blood draw before March 15. She was deathly scared of needles, which was not so much a problem because she has always been remarkably healthy. And she was the leading scorer at center forward for her soccer team this past fall...Less than weeks ago her foot hurt so bad her dad was carrying her if she needed to leave her hospital bed, and today she walked about 4 blocks. She is determined to play soccer again and sooner rather than later. Of course, since she lost 15% of her body weight - and that was muscle, it's gonna take some doing. I tend to think attitude is so important, in life in general but perhaps especially in chronic illness.

Which reminds me, in the hospital she got worse a lot faster than she had out of it, and even at the time I was wondering how much stress (at being exactly where her whole life she had thought to be The Worst Place on Earth - and the 7 blood draws, skin biopsy, and i.v. insert the first 36 hours definitely not helping) was exacerbating the flare or whatever was going on. I have read you guys talking about minimizing stress, and would love to hear more about that.

I'm also curious about nutrition. Does groupthink believe diet can help or hinder? What threads here address this?

And you don't need to write - if you want to tack a link on a reply that would be just great too. Most times I am on the internet thru my teeny tiny phone, and navigating this site is tedious that way.

Anyway, off to do night things with the fam (I'm on the west coast of California.) Have a good week, forum folk.

[Alysia]

Hi wtw,
the heart of a mother, caring for her daughter, is always so touching.
when I was 17 years old I was very sick, with my joints and strange sores on my skin. antibiotics didnt help. maybe it was already WG. before that I had ears inflammations. the point is that after couple of months, and without dx of WG i recovered. and if it really was WG then I was in remission without meds for 23 years. I hope your daughter can have full and long remission.
welcome to the forum :cool1:

[Jaha]

Wishing your daughter all the best. It sounds like she is getting really good care and tx. Stress does cause problems with us wegs, and having good family support is really important. At her age having good freinds to talk to would also help. Hopefully she will be in remission soon.

[HopeinTN]

I'm so glad you found us and even happier that it sounds like you have her in good hands. Welcome!

[BookNut]

I'm also curious about nutrition.

My PCP is an integrated physician, which means that in addition to prescribing medicine, she also prescribes supplements and recommends nutritional remedies. She has been advising me for years to eliminate wheat, soy and corn. I resisted because I really love bread. I finally gave in and tried it. Not sure if it has helped yet, but I have found it much easier to do than I expected. Rice pasta is very good. I bought an inexpensive bread machine and have been experimenting. Tomorrow I will send you a link to my gluten free webpages and will share the best GF bread recipe I have found. I also enjoy rice cakes with peanut butter and honey. I have found it switch much easier than I expected. Talk to you again soon. My best to you and your daughter!

[annekat]

Jacquie, ditto on the rice cakes with peanut butter and honey! I have not been too good at all about quitting bread, though. Or eating more veggies, or any of that stuff! I need someone to cook for me.

[MarN]

Dear Wtw:

Hi and welcome to the forum.
I am really sorry for what has happened to your daughter but glad that she is under good care of doctors and a kind family.
People in this forum are very kind and they have the knowledge and experience to help.
I do not know much, but have mentioned a few things that I know in the thread " Healthy lifestyle for Wegeners patients to prevent relapses". Also many of our friends here, have commented about it and I learned a lot from them. So, it could be a useful discussion to read. I believe that you should pay attention to her diet, physical exercises, mental state and as a whole her lifestyle.

I hope that your daughter gets well soon.

Wish you the best.

[BookNut]

I'm also curious about nutrition. Does groupthink believe diet can help or hinder? What threads here address this?

As promised - here is where to find a great gluten-free bread recipe. Gluten-Free Recipes - Wandering Booknut (http://wanderingbooknut.weebly.com/gluten-free-recipes.html)

Just scroll down. Be sure to click on Jacquie's Favorite Gluten Free Bread Recipe - Jules GF. There are also quite a number of other links on my website that might help if you decide to go GF.

Hope all is going well with your daughter!

[dennis2512]

Welcome, my husband has Wegs myself Lupus my mother Sjogrens this site is invaluable, brilliant support and information , wish it had of been around 25 years ago when I was a naive 17 year old dx with a autoimmune disease. Good docs are soo important ive finally found them here in australia dennis and I are now seeing same Rhem at a public hospital, we support each other and when im distressed i get on this forum learn heaps and feel heaps better, take care crissie and dennis

[Rini]

15 hum? so much to already face growing and this too. Well hopefully, as it sounds, ting will settle down for higher school levels. so glad you found us! I know most of the younger people tend to be on facebook but i do try to encourage people to join the under 40 group so others can find them.