|
|||
|
Message Boards
|
|||
| Hya My 5 month old daughter was diagnosed with Henoch-Schonlein purpura last month and as she is so young and unable to tell me when it hurts could anybody tell me weather the pain in the joints and stomache come when rash appears or is it a constant pain befor and after the rash, my baby is starting to get the *** y throat and scratching of the ears and feet which was how she was befor the rash appeared last month, and she has been hard to settle tonight as though she is in pain, does the pain worsen when the flu like symptoms appeear or when the rash appears or constantly?? Please help...from a worried mummy. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My son first had HSP at age 6 in 2006. He had a URTI and few days later had what we thought was a stomach bug because he was vomiting for a couple of days. About a week later he had severe swelling and what looked like bruising in his knees, ankles and elbows and knuckles. At the A&E he started to get the rash which really scared me and finally got the nurses attention because until that point they wouldn't believe me that he hadn't fallen over and hurt himself. He spent the next 4 days in hospital while every joint in his body took their turn to swell up painfully. His testicles, eye lids, ears, scalp and spine also swelled up and were very painful. While at the hospital they assured me he never had any blood or protein in his urine however his pediatrician says that the swelling of his eyelids and ears could only happen if he had renal involvement causing water retention so I don't quite know who to believe. For the next three weeks he continued to get the rash (not too severe) and recurrent swelling of his joints, particularly in his legs. He appeared to fully recover however for the next 6-12 months he suffered from frequent stomach aches and headaches. Then in July 2008 after a very mild cold he had a recurrence of HSP. It was a lot less severe and he only had swelling in his knuckles, feet, knees and ankles. He had a rash so mild that no one believed me he was getting HSP again until his joints swelled. It was just fine pin point purple spots on the backs of his legs and buttocks that never increased in size. He couldn't walk for 3 days but otherwise recovered really quickly although he did again get frequent stomach aches and headaches over the next few months. Right now he has just had a cold and we are keeping a very close watch on him. He has stomach aches, a slight temperature (which he also had the last two times) and pains in his leg. Hopefully it is a coincidence or if it is HSP then it will get no worse than a few aches. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| This is not really a reply to any one posting in particular. It is instead a short (I hope!) relating of my experience with HSP. Mine was apparently a rare case that began to bloom about a month after my 58th birthday. Starting as a rash made up of tiny pore-sized red spots on my lower legs that itched and burned when touched, the condition progressed into blood blister-like areas on my legs that became open sores, with all the nasty fluids and discomfort that term conjures. I continued to work throughout the six month period I was most seriously affected. It was a little slice of hell...but quite interesting to me all the same to observe the way my own body could mess with "me". (I had, until this episode, been the healthiest person I knew.) Gravity does have a great deal to do with the severity and location of the rash, welts and sores. My symptoms would ebb and flow, beginning low on my legs and spreading up to my torso, arms and shoulders depending on the percentage of time I spent standing at work or sitting. Sitting seemed a better option until the itching tender welts, an inch across, would rise a quarter inch thick from my thighs and backside. I developed swollen joints in my ankles. knees, elbows and sometimes my hands. I still have stiffness, swelling and pain. My kidneys were only a little affected, but now, a year after the rashes and skin indications have faded to a bad memory, my lower legs are discolored, I retain the pains of arthritis and my doctor (bless him) still monitors my kidney function. I have deduced that aspirin was the trigger for the onset of my HSP, it was a pain med I decided to take for minor pain that I hadn't taken in years. In less than a week and about 8 to ten tablets total...HSP. Is there anyone else who has developed HSP at an age similar to mine? I'd love to hear what lingering affects have been suffered. Or am I truly the ancient adolescent I have shamelessly proclaimed lo these many years? |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi there, my son is 13 and has had HSP for 2 years now on and off our Doctors said no ibuprofen because it is hard on the kidneys and they are effected with HSP. My son is now seeing a kidney specialist and has high amounts of blood and protein in his urine. So I would stick with tylenol. Hope this helps Christina |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| talking of Dr Lionel Lubutz, he sure is an excellent, smart and caring doctor-my son saw him too | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Wish us luck....we haven't done soccer or any sports in over 4 weeks. And with that we have been 4 weeks without a flair up.....coming this saturday I am going to let her play indoor soccer. Just a test to see if we will "flair up" again...I am sure hoping not | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My Son is still having "flareups" but thankfully he's happy and playing as normal. I check his urine twice weekly and it continues to show traces of blood and protein. His Dr has advised that it it shows higher levels I'm to bring him back. (at diagnosis it was at a very high level and nothing was done)Some mornings he wakes with swollen knees and painful thumb joints. I have noticed that when he's overtired he seems to break out in spots and it's the next day his joints are affected. Just before Christmas he had a check-up/follow-up with his consultant and we were slightly disappointed as again we didn't get any answers. Were told that it could take months or even years to get better or sadly he might never. Has anyone else been told this? We are in our third month of this. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Lauren has had hsp since Oct 21, luckily for the last 3 weeks we have had no "flair ups" We go see a pedi specialist at Childrens Medical Center of Dallas in January. I just want the "clear" so she can go back to her soccer, she is a very active 9 year old normally. Its a horrible disease, thank GOD that we are fairing well. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Did you ever find a specialist for HSP? I would prefer to see someone who specializes in immune system disorders, rather than a rheumatologist that specializes in the arthritis symptom. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I would like to know how your son is doing. My 2 3/4 year old was also just diagnosed with HSP a few weeks ago. We just took him off steroid treatment and yesterday a few more rash spots appeared. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi I too have had HSP and was also treated at the Royal Melbourne Childrens Hospital. I was diagnosed when I was 11 and now I am 30 - So a while ago. I remember it so well. I was originally misdiagnosed in my small country town and then 6 weeks after my first signs and not to mention many doctors appointments because my case worsened I ended up in RMCH. I was treated by a lovely team. Lionel Lubitz was my peadiatrician he was so wonderful and such a smart caring man. By the time I attended RMCH I was internatlly hemeraging in my Kydneys, stomach, Bowel, and liver. I had lost so much weight. I was classed as bilemic as I would manage to eat a small meal then be sick for 3 days and so on and on. No food stayed down. I passes massive ammounts of blood in my urine and stools. I was started on steriods straight away. I was literally days away from renal faliure. I stayed on steriods for about 3-4 years to help my organs repair and to keep the HSP away and from not "flaring" up again. After many visits to the hospital at about 16 I was finally given the all clear. I know these years where so hard on my parents the travel, watching me in pain, financial struggles and the moods and reaction from the medication. I have had no relaps or problems since the age of 16. I regularly have my kydney and liver function tests to make sure all is well. When I fell pregnant with my son I had no complications and my doctors believe I should be in the clear for the rest of my life. I have had scaring to my kydneys and liver but my body has coped well wish it. I am so thank ful to all the staff who looked after me at the RMCH they were so great and I could not thank them enough. Harley Powel was my renal doctor, he too was unreal with making sure my kydneys were well monitored. I wish you and your son all the best of health. I understand how you guys are feeling. Feel free to ask me any questions. take care!! | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 4 year old son was diagnosed with HSP five days ago. He is presently in hospital on a IV drip. He is unable to keep any fluids down, even the fluids from the drip and is constantly vomiting. His rash has spread and is now on both legs. He is lethargic and weak, this is heartbreaking to watch. Does anybody know how long it may take for the vomiting to subside? He will not be able to be discharged until he is able to keep fluids down. Please reply with any advice you can give us. Many thanks. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 3 year old son was diagnosed with HSP about 3 weeks ago. I wanted to share my experience with HSP. We have had two ER visits and 4 or 5 Dr. visits. It has been awful. His symptons were swollen knees and ankles with broken blood vessels and red spots from his bottom down to his toes. He has complained of stomach pains. We are into our 3rd week and the rash is almost gone but, even this morning I had to give him tylenol because he was having stomache pains. The pains he has are quick and then hes fine and then in an hour or so he'll complain again but, as soon as they come they go (thank goodness). One of the ER visits were because of his stomach aches he was in alot of pain so, I just decided to take him fearing it was insuseption (not sure if I spelled that right) that you can get from HSP. We were grateful that his intestines looked fine. From the ton of information that I've read everyone can experience something different. This is one of the hardest things me and my husband have had to go through. It's been awful that he has had to go through this for so long. The Doctors have told us that HSP is not contagious but, have decided to take my son out of preschool for a few weeks for fear that he might catch something else while his immune system is not responding right. The Doctor put him on a four day dose of Pretizone. The second day off of Pretizone his spots came back a little and the fourth day being today he complained last night of a stomache ache and has complained today also, but he does seem to be getting better and we hope that he continues to do so, 3 weeks have been long enough. No child should have to go through this. Hopefully someone will find away to prevent this awful thing. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My 2 1/2 year old son was diagnosed with HSP two weeks ago, after first showing signs on the 7th of November. His Rash has been coming going since the start of this illness. He's now on his 3rd bout! Has this happend with anyone else? It seems that everyone who gets this disorder are affected differently in length and symptoms. It would be nice to hear from others who have posted on here to let us know how they are doing and how long recovery took for them. I just don't know when my little one will stop suffering. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| I had this disease when i was eight[Second Grade] and told that it might show up again. It reappeared when I was in Fifth grade [Im in Tenth now] And everything i do ..such as getting shots and such has to be made sure that it doesnt have an auto immune reaction. [I cant have gardasil :( Cause my kidneys might fail] Its Really sucky. :{ But oh well. I hope yer sons okay though. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| HI jen.. My daughter who was doagnosed on sept 4th has just afew days ago come off the prednisolone.. We to were in and out of hospitals.. Her pain in her joints has now settled down.. she does have a trace of protein and quite a bit of blood still in urine altho her kidney blood work is all coming back good.. I did find that when she would "overdo" things that her rash and pain would flare so i would keep ut lil one content... It is now 3 months she has been battling this.. tomoro we hav renal clinic so ill be interested to see what they say.. her rash has gone for the most part besides some quite nasty scar'ing.. her joints r ok besides reoccuring ankle pain.. blood and protein still strongly evident in her urine but we have been told that this could continue for a long whiole but as long as her blood work is coming back good then she should be ok.. she has also had a kidney ultra sound and xray of the abdomen which have both come back good.. please contact me for any further info.. thanks | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My son who is 2 3/4 has just been diagnosed with HSP today. After our third trip to PMH in the last week i feel a kid of relief that at least his condition has a name. My GP actually gave his condition a name on Friday but the doctors at PMH were not sure until we returned to them today with the god awful rash that had spread. It looks really nasty and contagious (which i confirmed from them about 6 times that it was not) but as others have said does not seem to bother him. A few of the spots have developed into sores on the knees and elbows but the doctors said this was most likely due to rubbing from clothes and sitting on the lounge all day. His symptoms started 1 1/2 weeks ago with stomach pains and loss of appetite plus occasional vomiting. The spots developed 3 days ago as a light rash but the doctor's at PMH were not concerned and said to come back if it got worse. Which when we woke up this morning i couldn't believe how much the rash had spread. He is at least starting to eat a bit of food (it has been over 1 week since his last decent meal) and i make sure he is drinking fluids all day. It is so sad to see your little active happy boy turn into a grouchy, grumpy lump on the lounge. I am so glad i found this thread and to know that i am not alone. |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| My daughter whom is 9 was diagnosed with HSP recently. It all started on October 21st when she was sent home with a fever of 100.4. Being a nurse, I have her motrin, and thought no more of it. It was just a week later on the following Tuesday when she could not walk, her ankles were twice the size. She also had the purpura. We were put in the hospital on the 27 for testing and sent home on the 28th. She was walking better, but still very sore. On Oct 31st we were seen and cleared to play a soccer tournament, big mistake! The purpura was horrid by sunday. We went back to the dr on the 4,5 and the 7th the pain was so bad we were back in the hospital getting morphine every 4 hours. She stayed this time until the 10th, we were discharged. Now I have noticed if she over does it in a day then the purpura is worse, and the joints hurt. On thanksgiving she was chasing the boys and fell on her knee, now that knee is 2x it's size and she has purpura all over from belly down, more on the injured knee. Any help on how long this lasts? Should we be playing sports at all? Also, her urine has been coming back with a "trace" of protien, is this a concern that it will get worse? Thanks in Texas, Jennifer | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi my son had hsp over 12 months ago the dr's at melb's childrens hosital explained that only a small percent of children with hsp develop kidney problems my son falls into this category. His problems are reasonably mild he has protein in his urine which makes his blood pressure rise so he is on medicine for now at least they predicted that he would get better but we are still waiting. At the moment we are having a few health issues as he really hasn't been well since all this started, really it's been one thing after another, i am worried that he is having a relaps. Has anyone heard of children relapsing after 12 month period? Also is there anyone who's children have had chronic constipation and tummy pain since recovering? To re address the problem of kidney involvement it can range from mild damage (like what my son has) to renal failure and in a samll percent of children wo go into renal failure some don't recover but that is a small statistic and the nephrology department assured me that the complications are very broard and that renal failure is quite a severe reaction i hope this helps :) |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi.. My daughter 8 has just been diagnosed 3 weeks ago. how is ur daughter now? It doesnt seem to be getting better.. as u said no sooner does she perk up she goes back down again. she is on prednisolone which i guess has helped but as we tried weaning her off she had a relapse.. Has ur child been on this drug? They keep telling us about possible kidney damage.. do u know anything about that? | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| how is ur child now? my lil girl 8 has just been diagnosed :-( | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| hi there.i had hsp when i was 5 years old.i'm now 33.i remember i lot of pain and discomfort but got through it.i think i was in hospital for 3 weeks.from memory the doctors used steriods to boost my immune system and i had all the symptoms that your daughter has.i wish you all the best.rick | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi Fiona, we have just spent 3 days in hospital with my 5yr old daughter who slowly over the past week started showing symptons of swollen joints, the red/purple rash & tummy pains. We took her straight to the Mater (who were brilliant) where they diagnosed her with HSP. I had never heard of it before. She is on prednisone and nurofen 4 hourly. We got home on Saturday but she's still very uncomfortable, this morning she woke with swollen eyelids and couldn't open her eyes. I hope and pray that she recovers soon and NEVER has to go through this again. I hope the same for your daughter :-) The Mater told us it was quite rare with only 4 IN 100,000 cases. All the best - i sincerely wish you all well. Jo | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| To the lady who was looking for some relief for the pain for her daughter...I think that was a couple of months ago but if not prednisilone had instantanious relief for my daughter. she didn't eat for weeks and within 4 hours she slept then ate 6 slices of toast and was so hungry! of course you cannot stay on this drug and weaning her off was hit and miss and it kept reoccuring, however if she ever had it again I would put ther straight on the drug so the poor mite did not have to suffer. | ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Hi there My daughter had HSP over 2 years ago and touch wood, I dont really want to say it, but has now recovered and has no symptons. i was told by the specialist at Childrens hospital in Mlebourne that 50% of children its a once only thing but the other 50% have reocurring bouts throughout their life. It was the most horrendous experience and she was only 4 years old and ended up hospitalised 3 times in 6 weeks due to dehydration from vomiting and not eating or drinking. The stomache pains were the worse symptons as well as the joint pain in her elbows. The actual rash looked revolting but did not bother her. I was reading some of the other posts and people seem to worry it can be passed on. from what i have learnt it is auto-immune only, no one can catch it nor pass it down in generations, I do however worry she is predesposed to other auto-immune diseases as they are allergies but the allergan is unknown. I hope your daughter gets better soon |
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
Copyright © 2009 Yahoo! Pty Limited. All rights reserved. Advertise with Us - Privacy Policy - Terms of Service - Help |