many time viewer - first time poster

[Sangye]

Daggar, it's wonderful that your daughter has you in her corner. You do so much to educate yourself about Wegs and her particular case. That's what will make a difference in her recovery.

Have you gotten a VF specialist to consult with your docs? Canada has some, and you can also access the ones in the US.

[Daggar]

Thanks for all the responses.... the wealth of knowledge from the people who have gone/are going through it is "invaluable"!

Holly is one of those kids that just doesn't like to talk about her pain or things that are bothering her - complete opposite of myself! If I'm not performing up to par I'm all over it! lol

She told me last night that she has been having ear popping sensations over the past 2 days and I'm starting to wonder if there was some disease activity within the inner/middle ear to cause an infection or previous inflammation that the standard dose of oral prednisone hadn't dealt with? Seems odd that this just started happening since the iv methylpred treatment on Monday. She has been dealing with a cold over the past week or so as well which she has dealt with quite well.

Her Nephrologist has said that it is either an infection or a slow reaction (toxicity) to the cyclophosphamide or sulfatrim/cotrimoxazole. Her rise in AST, ALT and LDH have been very slow and consistent over the past 2 months. They are now above normal and appear to be continuing the upward trend very slowly.

Sangye -- yes, Holly was lucky to have been able to go to the Children's Hospital in Calgary where they have a "team" of specialists that have dealt with the WG issue. She has a team of Nephrologists and Rheumatologists as well as an Ophthmologist, Gynecologist, Dermatologist and Paediatrician. Some of the doctors are professors at the University of Calgary due to the close proximity and working relationship. I've also been in touch with a Dr. Brogan (Jack's neck of the woods - Birmingham, England) for some needed input on the course of treatment. I did not want to make any "wrong" choices at the start so it was awesome that he responded!

All-in-all, she is in good hands and she'll be doing some further tests later today and early next week to try and figure out the next step.

Marta -- thanks again ... you are too kind and Holly and I are looking forward to meeting you in the future!!

[marta]

I'm posting this to hopefully put your mind at ease a little. I had the ear problems at first, and when I went on the drugs it took a while but I also experienced the popping in my ears. From my understanding and discussions with my ENT, the early blockage and hearing loss and fluid in the ear is due to inflamation and the shutting down of the eustacian (sp?) tube. Once the inflamation starts to subside (and I imagine this is happening quickly due to the extra IV methylpred) the tubes start to open up slowly and the gunk built up in there starts to move around - hence the popcorn in my head feeling. It was shortly after that, that things in my ears started to normalize and I started to get some of my hearing back.

[pberggren1]

Thanks pberggren1!

A fellow Canuck ..... wish it were hockey we were chatting about!

Have you had any issues with getting the right doctors? I've heard a lot of nightmares from the clinic we go to regarding adult diagnosis and care. It is horrible for Holly to have acquired this at 14 but from all accounts the Children's Hospital is very good at dealing with WG.

Hi there Daggar:

I am very fortunate now to have a Wegs specialist right in town here. His name is Senyo Tagboto and by far the best doc I have ever had and I have seen just over 60 docs in the last 8 years. His specialties are Internal Medicine and Nephrology. He also comes from Jack's neck of the woods and worked with Dr. Adou and Bacon and Savage. He said back in the UK he was involve in diagnosing about 1 case of Wegs a month on average over 18 years. And on top of that he saw Wegs patients in the clinic by the hundreds each year. So he definitely knows Wegs. If you run into any problems with docs or are not sure about something just let me know on here or send me a private message. I am more than willing to help. I'm sure my doc is even willing to consult if need be.

[Daggar]

Thanks Phil... I'll keep that in mind. Hope you're doing well!

Finally got some numbers back from the lab work done yesterday and it all looks "good"....

Holly's liver enzymes are on the way down and her serum creatinine level is at the lowest (101) since being admitted to ER back in November 2010. Urea level is also normal for the first time since then.

Her blood counts have almost all climbed/dropped into the normal range (RDW still a bit elevated).

C-Reactive Protein still flatlining at 0 and the nasty Proteinase 3 antibody believed to be linked to all the problems has dropped to its lowest point 5.5 (just above the 0-5.0 normal range)

So we're cautiously optimistic for her and it is truly amazing how a test result can elevate your spirits! Hopefully they continue.

Have a good weekend everyone!

[jeriorleans]

So very sorry to hear about your daughter. My son, A.J. was diagnosed in September of 2009 at age 13. His journey began with an ear ache in Feb. of 2009. His pediatrician said he had fluid behind his ears, no worries it will go away. He was given his vaccinations at that time, which has always made me wonder if this was the "trigger." Things went downhill from there. He had nose bleeds and crusting. He had constant headaches and complained that his "face hurt" and his teeth hurt. He had strange purple like blisters on both ears, a couple on his face, and his chest. Looked like ink marks. Dermotologist said, no worries, its just blood under the skin. Ear aches continued. Fatigue started. First ENT put tubes in his ears in the office without anesthesia. A.J. was in so much pain at the time, he didn't care how much it was going to hurt. Tubes fell out in 2 weeks. Pain continued. Numerous trips to the ER with various diagnoses from swimmers ear to ear infections. Finally in August of 2009 he was seen by another ENT who took him i into surgery to put new tubes in his ears and found the granulation and sent it out for biopsy. Prior to this no one had even mentioned Wegeners. Unfortuntely the ear problems had gone on for too long and done too much damage and he lost about 80 percent of his hearing. He now wears hearing aids. The Wegener's also affected his lungs. Unfortunately, the only pediatric rheumtologist in New Orleans didn't know what he was talking about so A.J. treats at the EMory Clinic in Atlanta. He started with Cytoxan and 60 mg of Predisone. He now is on Methotrexate, Bactrim and Folic Acid. Although he seemed to be doing better, his doctor called me last week and said we are at the 1/2 way mark (one more year of methotrexate) but he wasn't real impressed with his blood and urine specimans. He developed blood and protein in his urine several months ago and it has not gone away. The protein left for a brief time, but its back. They are going to monitor it for another 2 months and then if it is still present perform a kidney biopsy.
Its a very scary ride. I still have not learned not to overreact whenever he stiffles or sneezes. He constantly (and impatiently) reminds me that not ever cold is Wegeners.
I have found that talking to all his teachers and principal first think and apprising them of his situatin is the best thing to do. Fortunately, he goes to a private school (public schools not an option in New Orleans) so they are a little more lenient when it comes to missing time.
Well, I've gone on and on. Feel free to ask any questions. There aren't many young Wegener's patients out there.

[Daggar]

Hello Jeri,

Sorry to hear about A.J. as well. It sounds like he has been through a lot and I hope the doctors in Atlanta have the WG under control. Your mention of kidney involvement scares me because that is what really hit Holly hard. Has AJ's serum creatinine been rising along with the protein in his urine samples? You mentioned prednisone with his initial treatment - what dose is he currently on? Is there a possibility that the WG is still active and is effecting his kidneys or is this a result of what he went through?

I hear you with the "overreaction".... the first month after Holly was released from the hospital was the absolute worst! I became her shadow and almost drove her as crazy as myself!! We're now at a more "manageable" craziness. Holly's school/teachers have been amazing throughout the entire process. She goes in a bit late each day due to the chemo/steroid treatment and she has regular clinics/lab tests to attend so they set aside a couple of periods each day where she can catch up with help from a teacher, vice-principal or principal.

The one thing I've learned from this is that kids are "tough" and surprisingly rise to the challenge better than most of us adults. Still... I find myself wishing they could somehow hook up an iv to Holly and I so we could switch places.

[jeriorleans]

My thoughts exactly as far as changing places. I think as kids they hide so much pain and I wish that just for one day I could take all of that away. I don't think we can even imagine what they must be going through mentally and physically. It only takes them googling Wegener's to know that this is a very dangerous disease.
A.J. is not on steriods at all anymore. He was weened off after about a year. I'm really having a bad feeling though, he is sniffling and picking at his nose like in the early stages. (I say this while at this exact time he is outside playing basketball). Overreacting? I hope so.
There are other sites oriented to parents with children with Wegeners on yahoo and facebook but I really don't find them very useful. THe yahoo group seems to get way off subject and not offer much useful information. Feel free to email me personally at [email protected] if you would like to chat.
MAke it a habit to check this site reguarlly. It has invaluable information and advice from great people.

[Palmyra]

Hi there Dagger,
My daughter also has WG...she first developed Crohn's disease at the age of 14, and WG at the age of 20. She is now 25, and I am in the current position of pulling back on the parental controls, and encouraging her to enter this board and make more of her own medical decisions. That hasn't been easy, as she is still of the mindset to be 'normal' like all of her peers. She is only just now beginning to accept the fact that these are chronic conditions, and she needs to take advantage of any programs that may be of assistance.

In retrospect, coming from someone that has has a child with serious disease issues during the teen years, it is important to advocate for all of the educational and government provided advantages you may have available. I learned to navigate physicians (they can be angels or nasty buggers,) and schools alike (really hard in this State!) to try and provide the best services I could muster. Things are different here in Texas, USA, but emotionally all very much the same when you have a child with a serious illness.

Best wishes to you, and glad that you found us....there is literally a "world" of information on this site!