Year and a half after HSP diagnosis...
Posted , 6 users are following.
Hi all.
I used this site last year when my then 13 yr old daughter got HSP. It showed up as spots all over her legs and the palms of her hands. Some did turn to bruises but her biggest complaints were joint pain, nausea (with foods that never bothered her before making her feel sick) and headaches. It was an extremely long few months Feb-June until we could actually say she felt "better". However, she was left with the nausea and headaches, as well as anxiety (she missed a lot of school and social events during this time).
Wondering if anyone else has had symptoms this long after. I know this is a crazy disease and it looks like anything can happen but I feel lost because she is nauseous and has headaches every day. We did see a neurologist last year because she had a migraine which she continues to get. She also gets tension headaches every day. She does talk to a counselor too and she is taking medicine for an antidepressant, a small dose she just started a few months ago. The depression part makes me nervous.
Thoughts?
0 likes, 6 replies
steph76194 Beanie926
Posted
Hi.....
Reading this has been like looking in a mirror. My daughter was nearly 12 when she developed HSP...horrific rash, joint pain, kidney nephritis etc etc....she recovered went back to school...then feb this year she had a huge relapse this time she had shadows on her bowel..excruciating stomach pains...mesenteric lymph adenitis....causing sickness, joint swelling....she basically managed 8 days in the last term and a half up to the summer holidays. It has been hell. She has been left with crippling anxiety....and depression. She is seeing a counsellor. My wonderful sporty chatty noisy 13 year old is now a depressed sad forever feeling sick shadow of herself and no one is able to make it better. We are still under the hosp but now she refuses to go as the consultant last time dismissed her symptoms...as she said " there is no point in going back...no one cancure me.." I had never heard of hsp...but this is an horrific condition and as a family we have all been affected. I fear life will never be the same...:0(
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grneyedgrl74 steph76194
Posted
Hi Steph, My heart goes out to you and your daughter. I feel for both of you! My daughter Zoey is only 10 and developed symptoms of HSP 2 months ago and finally got a diagnosis a month ago. She was having extreme anxiety and fear as well because of the severe outbreak she had. I asked her permission to share her photos as we went along for helping others to become aware of such a rare disorder and for prayers along the way, she agreed to let me. In that process she got to read a lot of the prayers and know she was being thought of during this difficult time. She has had such pain at times that left her using a wheel chair and crutches. I am wondering if Steph would like to talk to Zoey and maybe this could bring comfort to them both. Zoey has said almost the same things as your daughter and feeling like what's the point and she is sick of dealing with this.
It has affected our family as we deal with her daily issues, such as today, after school her legs are extremely swollen and painful. Every day is something new or more as to how she feels. I know this is suppose to only last a couple more months (so they say) but it is not looking that way from what I'm reading on these forums. As to your last comment of your fear, you are right. Life will never be the same, and for your daughter, certain symptoms will become a new norm. It's difficult to say that and please know I struggle everyday with this issue for Zoey and for all families dealing with this difficult disorder. Zoey has had to stop dancing and tae-kwon-do for now because of her swelling and pain in her joints. She is able to finish out her fall ball softball season since it is short. She was extremely upset that she couldn't do dance. So when I read your post about your sporty chatty girl I immediately thought of my Zoey. So I hope that maybe your daughter could be of some comfort for Zoey during this as she doesn't know a single soul that has this unfortunate disabling disorder that she could share her struggles with and for someone else who has this and truly understands the pain and suffering I believe could bring comfort and healing to some degree. Please know you and your daughter are in our thoughts and prayers!
desiree83746 Beanie926
Posted
Hi I'm so sorry to hear about your daughter! Everything you are describing is exactly what we have been going through for 3 and a half years! My daughter was diagnosed with this awful disease when she was 5 and it lasted off and on for a year! With pretty much all the same symptoms as your daughter!She is now 8 and it has returned! Looking back at the last few years I now know that she never stopped having the symptoms related to the disease ! She always have stomach and joint pain after the disease was SUPPOSEDLY gone! It seems worst this time around !I hope everyone is different and is luckier than we have been with this disease and wish you,your daughter, and family the best.
grneyedgrl74 desiree83746
Posted
I'm sorry to be a mom hear reading your story. However, I'm comforted that my daughter and I are not alone with this. She was diagnosed with HSP after a severe outbreak and second trip to ER someone finally recongnized what was going on. I wanted to actually ask you if any tests have been done to rule out Wegner's which mimics HSP but with ongoing symptoms that are chronic and lifelong? Although my daughter has had all her blood tests come back normal and negative for ANCA it is still something I'm concerned about as she has an extremely sore nose that has been bleeding on and off for the past month. We have an appt this Thursday at Children's Hospital in Seattle with Otolaryngology hoping they will do a biopsy to give a final result that will determine if she has Wegner's or not. It is the only 100% proof that will determine if one has it or not. .....I'm sorry that any of us need to be here, but extremely thankful to know we have each other for support! You are in our prayers!
Cinders68 Beanie926
Posted
Hi, so sorry to hear your daughter has HSP. My daughter was diagnosed last September, 2015. My daughter was 13 too. We worked out in March what was causing her to vomit almost daily was she had suddenly become allergic to yeast and yeast extract. All three hospitals that she was hospitalised in all thought it was either part and parcel of HSP or my daughter was not of sound mind and didn't want to leave hospital after 8 weeks of constantly vomiting. Thankfully my mum diagnosed it and it has taken me months to get the hospital to agree to an allergy test. This will be in 2 weeks time. If my mum's diagnoses is correct (as my daughter has only been sick twice in 14 weeks due to yeast) then I will be able to have meetings with said hospitals to find out even after doing a food diary they dismissed it and as the vomiting went on for so long as did the drugs, all of this including the Nephrotic syndrome could have been avoided. Please make a food diary, ask your daughter within an hour of eating any food how she feels. I used to get the word iffy if she just felt unwell (YEAST EXTRAXT) and not well, tired, fatigued as if she had run a marathon, sleep and then vomit. HSP is like cancer, it needs a trigger. Once you find the trigger and stop feeding the virus it slowly dies. It's the meds and the steroids that take years to leave the body which were all mainly unnecessary. My daughter has spent no more than 3 weeks at school this year and will hopefully start back in September. We are still not clear on her continued health as her consultant has been away since march and the stand in ones have been useless at best. Luckily she is not on any meds since feb and their trial and error method stopped!
melissa19923 Beanie926
Posted