Henoch-Schönlein purpura
Posted , 6 users are following.
My 4 yrs old boy has this since 21 March 2017 & now it is 8weeks.
He had swollen ankle then moved to knee & back to ankle again.
All this repeating for few round. His tiny red spots come n go too until last week we thought that he is going to heal totally as getting less n less spots. He starts bit feverish that time. The next day his fever is gone but red spots again getting lot and lot to appear ! So sad to see all this, when can he heal ?? pls share me your experience if you have any.
The worst part from all of this is he hardly walk at the beginning ( the 1st attack) but luckily this time maybe we counted as 2nd round, he is no so pain even with swollen ankle again. He did blood & urine test when 1st attack & sound ok, no other problem.
I just wish somebody to tell me, how long this type disease can be cured totally...TQ.
0 likes, 16 replies
theresaaa
Posted
Is there anyone there to advise please ? actually im 1st time to post in here & dont know am I posting in the right area.
For those healed from it, any supplement to help the process ? or just let it heal by itself ? TQ in advance.
chanfh77 theresaaa
Posted
Dear theresaaa,
So sorry to hear about your son. I hope he gets well soon or at least have it unmanagement so he can lead a normal life. Cases are all different from patient to patient so I could only share with you my experience with my son.
He was 3.5 years old when he first showed signs of HSP (of course we didn't know what it was then) and he was admitted in Jan 2016. After 10 days in hospital the Dr. was not able to confirm his case but only suspects its HSP. During the whole time he didn't have appitite and was on drips. Eventually we sent him to Singapore NUH and it was diagnosed as HSP after doing a scope to rule out other possiblities. In his case, it started with stomach ache and for the first 10 days, he has no signs on rash or swollen joints. Each time he eats, the pain becomes worse leading to vomitting and eventually he rather starve which is why he is on drips.
Its been a year now and he is still classified by the Singapore Dr. who is treating him as chronic. Over the course of 2016, he had many relapses which largely depends on managing it via steroids. Initially we were told that it is self limiting and will eventually go away. After being on steriods for 6 months, the Dr. replaced it with Cellcept and he had to learn to swallow pills with he takes 4 pills daily. This course has allowed him to recover from the side effects of steriods but that does not mean he is all well. As symptoms of all patients are different, we as parents learned that we are the best person to know if a replapse is happening as we spend mote time with our son and can best observe his behavious leading to a relapse. Early 2017, we did a follow-up and was told to continue the midication and observer for another 3 months. IF he does not have any episods, then MAYBE we can start reducing the dosage. Steroids are on stand-by only in an event soe infection causes a relapse.
To answer your question, no one knows when it will go away. We can pray and hope for the best. Being able to diagnose it its the best and from now on is learning how to "manage" his relapse. I've searched the net and believe you have so too only to find that there is no clear anwer. So what is important now? My opinion is "manage it". You will learn and eventually be the best person to detect a relapse as you can see all the change in mood, behavious and visible signs such as redness, rash spots and evenutally swealling. Managing it means to intercept its degree of pain before it ruins his day(s). If you step-in early upon confident diagnostic, you can provide him with suitable dosage of medication to keep it at bay and he'll well and leading a normal life again. However this does not mean over reacting too early and misdiagnose the symptom.
For example, my son's HSP has always starts with stomach pain. We do not give him meds because he complains but rather we give it some time to rule out possiblities such as normal stomach pain of indigession, constipation or just gas. First we try to help him relief the pain by rubbing on his tummy, drinking more water or making him sit on the potty. We will monitor for 3 days. If its consistant and he becomes inactive, poor appitite, not willing to walk, can't stand straight or so, then we can be quite sure its a relapse.
Thank God for giving us hope, friends who gives us courage and portals like this where we know that we are not alone. So we stop asking when will it go away but rather how can we make his life better. Fingerscrossed, maybe we can eventually reduce the Cellcept he is taking eventually. By the way, Cellcept is a drug made for transplant patient so it has similiar effects by lowering the immunesystem so that it stops attacking the body. Please consult your Dr. for proper medication. I'm just sharing our experiences with time and medication taken to encourage you to focus on managing.
I hope you feel must better to know that with today's medicine, your son can have happy days ahead and within reach. Hopefully in future the doctors can eventually find the cause and discover a one-off solution. In the mean time, learn to manage it and with it under control, they can be jumping and running and happy again.
Take care and have faith.
theresaaa chanfh77
Posted
Hi, chanfh77, thanks to have ur reply & yes, from this forum & discussion abt HSP here, I feel that we are not alone to face this type of disease.
Sorry to hear your story too but good that you are so positive.
Actually my son is still happy, talkative & active even with his red spots on. He still can jump, run as usual except the 1st time attack him like what i said in my 1st post here. Only that time, he can't walk as knee swollen in one the early am but after taking steroid from
Pediatrician , he recovered at that night. Luckily no more painful like that after that inccident. We consult two specialist & the 2nd pediatrician confirmed it is HSP but no medicine given as he told us it will recover by itself.
Just that we as parent feel so bad to see the red spots can't really go away & at the same time we are really hoping that beside the red spots, he is fine i mean from internal part of body.
The blood test he did is not the full test but his urine seems ok at that time. Im wondering when should I bring him to do the full blood test & urine test again. Now with the red spots still on ? or wait until it getting less to do ?
Talk about managing it like what u said, I really dont have any idea how to manage the red spots as it becomes more n more very fast after it gets start. From leg to arm & ears. How you manage it ?
Please advise me again.
TQ. Hope your son is getting better now.
chanfh77 theresaaa
Posted
Learning to manage it takes time but certainly you will learn and understand the symptoms, behaviour and build up a time line.
During his many episods of relapse when we referred to the hospital and as such inconvinience as his regular doctor is on leave and we had to refer him to the doctor on duty, we were told off is statements like "there's only stomach pain, what makes you think its HSP?" or "there are no other signs, where are the rash?" it made me ask this simple common sense question.
As what reading tells us, HSP has various symptoms of which includes stomach ache, rash, joint pains and renal fauilure. In my opinion, renal failuare is the worse, one with permanent side effects. So is it fair that we allow doctors to wait until more symptoms to appear before confirming its HSP relapse? If the symptoms are rash and joint pains, then its not so bad as both these can recover pretty well. But what if during the wait, renal failure occurs? I feel its a pretty big risk to take and leaving it to the doctors to play the waiting game. So I acutally asked this to the doctor treating my son in Singapore and she told me that what I fear is correct and its best to avoid renal failure. She said that we as parents will have a better feel on what's happening and she encourages us to take proactive measures.
As we build up experience, we could see the dosage required for a reaction and also refering to the way the doctor explainson the dosage are started and later reduced we can re-apply these dosage when needed. I'm not sure about your doctor, since we don't stay in Singapore but seeked treatment there, the doctor acutally spends lots of time explaining to us on the dosage, objective and also guides us on how to adjust doses on our own.
As some are concern about the red spots, from what we experienced, it will eventually go away if the correct amount of treatment is being used. We also stock-up on urine test strips which we use to detect blood and protein in urine. This is another layer of measure to see if there are any relapse and most importanty early detection of kidney involvement. I'm no doctor and off all the symptoms I know HSP presents, I don't like it to reach the kidneys or its the most important part of this whole management. Spots, stomach pain and joint pains or rash recovers. In my view, I hope to totally avoid allowing symptoms on renal to appear.
Read up as much examples as you can and stay calm. Prioritise the symptoms in the order they appear for your child, keep a record of medication given against dosage against sings of recovery. All these will help you develope a plan.
Hope this helps and God bless.
theresaaa chanfh77
Posted
Tq for your reply again.
Actually my boy doesnt take any medication now as the 2nd pediatrician said no need as those rashes will come n go maybe for 2 rounds.
The good news is we just let him do full blood test & urine test few days ago & found that he is well for all test. Thanks God !
So now i think what we only can do is waiting the rashes to go away by itself completely ( hopefully really no too long & no more swollen joint pain). Meanwhile we still need monitor his urine & stool to make sure it is ok.
Wishing everybody speedy recovery here !
theresaaa
Posted
Anyone here know what cream can help a little bit to control this type of red spots ?
Many thanks in advance.
I've let him tried two types ie. one type cream & one type gel but no really help much to control red spots.
tavga90904 theresaaa
Posted
that's what im going to ask too. hoping for some replies. bump
theresaaa tavga90904
Posted
theresaaa
Posted
Just want to say TQ to have this forum to read about other patient situation.
Really feel better after reading those example & feel good to know some recover very fast or within few months. Give me some positive energy.
For those longer to have HSP, let us hope the miracle happen to everyone & we can kick it away & forever.
After read some example, I think maybe egg or cheese is one of the food that making my boy rashes getting worst. And the hot weather & sweating will caused it bad too.
theresaaa
Posted
( Just an update there for my own record, copy & paste as I replied another mum in her post )
For my own observation, it can happens due to many things ie. food ( the 1st we suspect), the weather, mood etc. My 4 yr old son having it since March & his rashes quite worse at 1st with swollen here & there esp the joint area. Until now it slowly becomes better even sometimes still pop up but no joint pain anymore even weeks ago still c the swollen. These few days I can c his clear skin & we all r very happy including himself. We try cut down eggs, chocolate, peanuts or watever nuts, seafood except fish. Actually he is a very happy boy no matter what happen to him. So his mood is not the main caused of this HSP happened on him i guess. Last night, we went a dinner which got seafood & he ate it. Then we saw his red spots coming back last night with all concentrate on his foot area.
So we are not sure wthr seafood is the main caused now or because of he sit still on a high chair with sock & shoes on which maybe caused the foot heat.
We still need to watch it out .
theresaaa
Posted
Update for myself ..
After the red spots occurred a bit on 04.06.17 & 05.06.17 as maybe coz by the seafood soup he taken on 04.06.17 night , his skin back to clear & clean again ( we were so happy) for the next few days. No more swollen too but appear again on 12.06.17, some tiny red spots start with left knee swollen, bumped up suddenly. A more bigger red patch seen near one of his ankle yesterday 13.06.17 but knee no more swollen. Today I will wait to see how later as he is not with me now.
Luckily no other uncomfortable except some runny nose & body bit warm.
No medicine taken except supplement as usual.
He remains super active & talkative as usual too.
theresaaa
Posted
forgot to add in...this round is happened mb bcoz of the eggs intake. We suspect it is eggs coz his skin was clear whn we totally cut egg out off his diet but he wanted to eat on 10.06.17 & 11.06.17 & also eat at school on 12.06.17 then that night it popped up again..so at the moment we suspect "egg" could b one of the reason.
annam31902 theresaaa
Posted
theresaaa annam31902
Posted
Hi, quite a while no update here..Thanks for your concern & let's me recall back his story here.
Abt last mid month, when his rashes getting less & can say no appears seriously again, he got fever one day & that mid night he started diarrhae. Always stomachache. Then stool mucus out with bloody stains. This was repeating many many times throughout that night. He & me neither can sleep well as always wake up. Even sometimes diarrhae got watery out ( not mucus) but also bloody stains. We were so worry. So brought him c pediatrician & advised to do stool test. His fever getting better that time.
We were given anti diarrhae, stomachache & antibiotics. But we only let him took anti diarrhae & stomachache medicine when c his stool still watery texture ( still with bit blood stains) & when he told us stomachache. Antibiotics no taken until the next next day only starts as his stool still no good texture.
That is for 5 days taking. Stool test only can be done on 3rd day as 1st few days were too watery & sample cant be collected. Result out two days later ( which is the 5th day from 1st day diarrhae). THANKS GOD ! Result was fine !
No special sickness identified. So pediatrician told us should be normal bacteria attacked him. Let him rest more & eat healthy food. Drink more too.
He started to recover day by day the following week. Touchwood until now he is good ! ( except last thur saw both his ankle bruising which I believe is coz by playing small cars at school & knocked off ). It recovered ard the 3rd day.
I believe ur son is getting better day by day too ! Let us pray for it ! Watch out his food intake. Eat healthy & drink plenty !
claire411 theresaaa
Posted
Hi theresaaa,
My son has been diagnosed with hsp this morning and I was just wondering if you're little one has got better yet as I've read up on the condition and I'm just very worried as I know it can take weeks to get better and can re occur any advice you have I'll be greatful 😊
Utdiva claire411
Posted
Hi there - just diagnosed this morning. He's vomiting all day/night. Will this keep up the whole time? Hope you little one is all better now!