support group for Parents with child/ren of Henoch Schonlein purpura disease

sry29

Member
Hi!
I am Su. A mom to an active 4.5 year old
Boy who has been diagnosed with Henoch scholein purpura or HSP.

I am looking for parents who have the same predicament as me so that we can share ideas,
Feelings and thoughts about this ailment. It is quite rare to find such children with HSP.

I am trying my luck here coz i m exasperated, frustrated and angry at myself..

Do join me!

Thanks a million.. Su
 


Hi reen...my heart goes out to u n ur child. But can u give me ur email address so that I can email u instead? Sorry. The forum here can be a challenge to type. Thanjs again. Oh! Please email me to [email protected]
I won't reply to u soon but will do so before the day ends. Thanjs again
 
Hey Su! Don't worry so much alright? HSP usually ends after four to six weeks. Sometimes with recurrence of symptoms over this period, but with no long-term consequences. Please take good care of yourself and don't blame yourself for what happened. I know it's very difficult to not blame yourself when our kids are sick, but self blaming won't change anything but make yourself feel more frustrated. Hope your Son speedy recovery and please take care of yourself!
 
Hi egg pudding, thanks for the support. Do u have a child or know anyone with hsp? Want to share experiences?
 
hi all, my nephew was dianosed with hsp. is there any good doctor to reconmend? currently he is consuming steroids. can share experience?
 
HI Lee Ian, thanks for sharing. I m so sorry for your nephew. How old is he and which hospital was he diagnosed? I am with Dr tash of children's Medical centre in kkh. He is the head of rheumatology, immunology and allergy dept. Hsp is rare in Singapore and from what I read online, kkh is the only hospital and doctor that knows about hsp. Moreover, there isn't much cure for hsp, ur nephew will go through some tests once he is with Dr tash. The tests would be urine tests every 3 or 6 months. Dr tash needs to know if hsp has affected the kidneys. The observation is 3 years.

My son is ending his 2 nd year of observation n entering 3rd year this Jan 2016. So far kidneys have been.clear of any problems.

If u need anything else, do email me at [email protected]. Hear from u. My best wishes of good health to ur nephew.

Suraya
 
My daughter 6 had severe stomache and was admitted to mount a for 4 days under our chosen pd. She has low grade fever during that few days. Blood tests show white blood cells was high and theres an inflammation. Stool has occult blood too. She was administered with augmentin and seems to get better and was discharge aft on the 5th day.

1 day aft discharge the pain came back. The pd referred us to Prof Quek from the paedetric gastro team from nuh. We couldnt wait for the apt as she was screaming in pain and appear restless. We send her to nuh ane middle of night. The dr diagnose her as constipation as she keep pointing her pain is on top of her naval area. They insert suppoistry let her poo. Aft poo still pain. Dr let us decide if we wan admit or monitor at hm ourselves. She says not easy to move apt early unless kids is hvg serious condition lik tumour etc. Neverthless we decided to admit cos we simply cant manage with her pains. There she stayed for 10days in nuh. During first 7 days, nothing was really diagnosed. They suspected constipation, retry mtd of clearing poo, tried debridate, buscopan all no improvements. Anyway prof quek finally came to see her the very nxt day. B4 that he sent the small drs frm his team to see her. They only gave her relief to her pain like paracetamol which eventually is not useful anymore as it cant mask the pain. One painkiller call voltaren accordg to nurses was inserted to anus ...can mask pain for 3 to 4 hrs then start screaming again. They finally decided do a top scope on her n realised the vessels in her first part of small intestines are red n obvious..a sign of small intestine inflammation. Till no new medication to solve the prob..still voltaren. Only thereafter where we spotted few red spots on her legs
(We remb prof quek did keep asking for any rashes in the beg) that we highlighted to one of the drs. He say maybe is insect bites. He feel that my girl has exagerated the pain or cant manage pain well..cos the condition is not that serious. They even send a therapist to play n distract her from pain. Nevertheless im still glad he told prof quek to come dwn n take a look n he diagnose this as Hsp. Steroid is given. N we discharge aft 2 days. Her voltaren seems to b able to mask pain longer...n longer..with steroids..so i thk its taking effects n theres improvements finally.im not very certain hers is really hsp bec her rashes is not the classical ones we see online...hers only a few red dots tht doesnt goes away when pressed...there couldnt be insect in airconditioned room in nuh..n we rarely went out. But thts the nearest diagnosis.
 
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Hi

Here's my experience. My daughter (3yo, 4 months) was also diagnosed with HSP.
First, she complained of leg pain (can't walk).
Then, we noticed bruise on the left side of the leg.
We brought her to GP. GP prescribed Rosiden (a kind of sports gel to ease the pain), and she was ok.

The next day, we noticed bruises on the right leg.
Of course all these while, our guesses is she has fallen down or sprained herself (but neither we nor the school remembers her having great fall). And she's not the jumpy kind of kids. She normally walks so slowly and rarely do big actions.

We applied the same Rosiden, and she got better.
As days go by, more new bruises appear, and then we noticed red spots at the foot calf (this was like 5 days after the 1st bruise appear).
We rushed her to KKH, and they diagnosed her with HSP.
Doctor asked if she had tummy pain, and I do remember her complaining of tummy pain in the morning (but i thought it's just a sign she needs to pass motion).

Doctor also prescribed Ibufren and paracetamol. But we don't let her take those, as she's not like in super great pain.
I just applied Rosiden on her, and she will feel good after a while, and even walk around.
If i don't apply Rosiden, she can be quite hysterical (like when I carried her, or when I took out her panties to go urine).

Today no new bruises, no new spots. I just hope that's it!

We are fixed for appointment with rheumatology end of the month.
And thanks for sharing that there will be rounds of review.
Just hope that it will go away soon.

Just a thought, could this be caused by some kind of deficiencies.
I'm asking this coz my gal is super choosy. She doesn't eat any kind of fruits/vege AT ALL!!!!

Appreciate any thoughts or concern :)
 
Dear Parent Rr,

I am so sorry for your plight. Being diagnosed with Hsp can be a very confusing time.

Firstly, what did ur daughter's rashes.look like? My son's rashes.looked like spots on the legs.

secondly, did u do an ultra sound scan? My son did his and there was some swelling on a portion of his small intestine.

Thirdly, which doctor in the rheumatology department r u seeing? I chose.Dr Tash a Thai doctor who has the most experience with Hsp.

Currently, my son has been put into open date appointments as his kidneys r not affected. Please make sure u tell the doctor if u see dark.brown.urine.

Yes, hsp is linked to our immune system which is dependent on our diet and nutrition. My son was a fussy eater Too but since his diagnose, I have been forcing him to take at least 3 portions of fruits and 2 portions of vegetables a day. I took a year off from work to do a diet overhaul.

I'm also an early childhood educator and I've Seen fussy eating children succumb to illnesses and thankfully not hsp. Nevertheless, my son's precursor to.hsp was frequent coughs, colds, asthma attacks and fever for at least 2 Years.

Now with a controlled diet of home cooked and hopefully balanced diet and support from supplements, he is in primary 1 and doing OK health wise.

He does complain of stomach ache.and knee pains but nevertheless he is an active boy.

These r my own observations and conclusions but the.doctors.would prolly say that ur daughter can eat anything. Currently, I am staying away from allergy trigger foods such as cow.dairy, highly.processed.food e.g fish.cake, hot dog, junk food mainly. I give him but kept to a minimum. Organic snacks.or food.made.with as little.preservativeS are the best.

My advise is to monitor her diet and.try.to revamp it slowly. If we can't control their diet and nutrition, we would be battling hsp for a long.time.

BTW.do text.me at 96287260 if u need more clarification.

Thanks so much for reaching out to me. I understand the desperation for answers.

Best wishes,
Su
 
Hi Su

Thanks a lot for replying.
Her rashes was like red mosquito bites, and when you pressed it, you could see it's like bruises. She didn't seem to be in pain when we pressed, though.
Doctor did not an ultrasound, but merely urine test. So far, the urine test still ok.
Doctor advised to give more fluids, and encourage her to go toilet more often (she's toilet trained already).

I don't know which doctor i have been assigned yet, as the appointment card did not say so.

And thanks for confirming that diet and nutrition do play a part.
I'm in desperation to try to alter my daughter's diet. But even yesterday I tried to give her some fruit purees, and she vomited it out.
I'm just afraid she will vomit the rest of the dinner out, so I basically stopped.
Hope i can get her to change bit by bit (can you share some recipes to 'mask' fruits/vege in their favorite food, if you have?)
We normally eat home cooked food, and my husband is very particular with processed food or junk food. So we give very little of those.

Nevertheless, I think we need to resort to some multivitamin supplements for time being, to help her replenish what she didn't get from her food.

Thank God, today no new spots either. I really hope that this is ALL :)

And glad to hear that your son is doing well health-wise :)
Will post updates in this forum, if there are any further developments.

Meanwhile, encouraging more parents out there to share their experiences as well.

Best regards
Parent RR
 
Hi all,

my daughter, 4 years old had been diagnosed with HSP last Friday.

Three days before everything happened, my daughter was complaining that her legs are in pain, and sort of refusing to walk, wanting me to carry her. So I thought she was being lazy again or tired, I told her to walk on her own, and she did, so I didn't cared much.

The next day morning, I was preparing her for school, she started screaming out loud refusing to stand and walk. I check on her feet and found something that look like a mosquitoe bite being scratched, it was red and a little like bruise. I was sure something is wrong but didn't expect it to be something such severe. I thought it might be the 'mosquitoe bite' that is causing her refusing to stand, so I applied some aloe vera gel to make her feel better but it didn't.

The same day I brought her back from school, everything seems normal, still talkative, still active, she eats, she plays, she drinks, she walks (limbing), once again, I thought was okay.

Till sleeping time, she told me she wants to go toilet, so I help her to the toilet bowl. as she was doing her business on the toilet bowl, suddenly I was really curious with how her leg is doing, I squat down and saw lots of really really tiny red spots on her feet up to the ankle. I was afraid, because my instinct told me something is not right. But she was her normal self, no fever, no diarrhoe, no vomitting, no complaints and still very active. So I observed from the toilet as she walks out the toilet to her bed, she was limbing much worst now. I couldn't bring myself to sleep. So I started asking some parents about this issues, they told me might be HFMD, and none said HSP (nobody knows). So I take it as HFMD and observe further.

Next morning, the tiny red dots started its way up to the thighs, still in its mini-tiny form, my daughter looks okay, like as if the dots wasn't there. But I decided not to bring her to school, since HFMD I initially thought was contagious. Till after the usual nap session, she started screaming out loud and the dots started to get larger, by then her feet was all swollen up. This time it really freak me out and I immediately informed my hubby and we went to KKH. The doctor then said it might be HSP, and did a urine test on her. Gave her paracetamol to ease her pain and swelling, if she still refuse to walk within 2 hours then hospitalization is needed. As expected, she was hospitalized.

The urine test turned out to be UTI (urinary tract infection), so Dr wasn't able to confirm it was HSP. So we did another urine test and more urine test.. but.. still wasn't able to confirm. The rash worsen and she started claiming to have tummy pain. By then Doctor was able to confirm it HSP due to the classic rash pattern that only appears on the legs, leg swelling, joint pains and abdominal pains. My precious girl is having a really hard time at the hospital. She keeps wanting to go to the toilet to pee but only drips came out (UTI). and keeps wanting to go to the toilet to poop but nothing came out (HSP). So she was attacked by both. I really do not know why she got UTI all of a sudden because she wasn't having any problems peeing at home. I think I have brought her in and out of the toilet for like 30 over times, and all are really hard for me and her, because I have to remove her pants, her legs are in pain, even when removing pants. And she is screaming her way halfway through sleep because of the abdominal pain and leg pain. Her abdominal pain is like on and off. Like every two hours, she will have abdominal pain for 5 to 10 minutes and then stop. But she is back to her active self whenever she took paracetamol. But that only last for two hours, after that she will be cranky again complaining of pains.

Whats really worrying me now is because of her medical history with the HSP she had now. When she was 7th months old, she was diagnosed with Kawasaki Disease. Doctors came and they said it was 'interesting' because she had two really rare diseases in such short 4 years of her life.

She was discharged on Sunday because she is still able to eat, able to drink, able to sleep, she is also starting to walk and running around, her urine is also clear, so Doctor thought its fine if she discharge.

Now she had to do follow-up checks on her kidney. Let's pray everything would be fine. And I learned my lessons, to be more observant when your children are complaining of pains. Sometimes we are so tired from work and stress about some issues we tend to overlook whats hidden in our children's message.

Hoped this post helps with some idea of how HSP react on your child. Just sharing my experience and hopefully get some advise from HSP-experienced parents on how to ease the abdominal pain. As my daughter still having problem with abdominal pain, the paracetamol dont help for very long. So any suggestions I would be appreciative. Thanks parents! :)
 
Hi Wynne

Thanks for posting your experience, and sorry for what happened to your daughter.
Su and I have been communicating and exchanging tips.

I don't really have any tips, but probably Su has.
You can contact her at 96287260. She asked me to share her hp here.

Hope the support group will provide some comfort in the midst of all the stress.

Rgds
Parents RR
 
To share my experience.

My 5 years old daughter was diagnosed with HSP since 5 weeks ago.

First, she complained of leg pain and later she said couldn't walk and rashes.

Hubby rushed her to NUH, and doctor diagnosed her with HSP.

Doctor asked if she had tummy pain and the color of her stools and urine. They nearly admitted her because of she couldn't walk but she managed to limb after taken brufen.

First both legs could not walk and the next attacked was one leg (left) by another leg (right).

This disease is very confusing as in you won't know which part of her organ is bleeding and how serious is it.

There was 1 day, she suddenly got high fever (about 39.6) and lucky recovered after next day. Likely inflammation triggered it and we didn't know which part. After that she complained 2 spots of her head is pain when touched on it. We monitored and it was gone after 2 days.

Totally hubby have brought her to A&E 3 times and a few times follow up PD appointments.

The 2nd time was rashes came back in bigger patches and up to her body, then followed by your fingers joints. Again, 3 days of brufen eased off her finger joints swelling.

The 3rd time after she complained that she has stomachache persistent for 2 days. That night she said medium pain from the little bit pain plus gastric. So hubby brought her to A&E again during mid night and they given her an appointment of next day. Doctor said her stomach pain likely because of intestine swollen slightly and caused it unable to push the gas out since she got gastric. With the medication given for her stomachache and gastric. It worked.

After that, rashes still some and go but getting lesser. Doctor said she just need to do urine test and blood pressure check monthly. Hope this end soon.

After read through the above cases, I find that our kids got common of deficiencies.

My daughter doesn't eat any kind of fruits (except small slice of guava)/veggie (except seaweed).

After she has diagnosed with this HSP, we have been forcing her to take a few pieces of veggies and fruits daily. I read from some website, people suggested elderberry is a good supplement for these kids who doesn't take veggie.
 
Dear mummy_sh, so sorry for ur plight. It's very worrying and confusing for us parents who do not know the cause of hsp and what's worst is the unknown cure.

Good that u r encouraging ur child to eat more veggie n fruit. This hopefully would boost her immune system.

Also, do encourage her to drink more water. The pain would come n go whenever there's an infection.

My son still has knee pains.when he walks Alot or is physically active for a long time.

This March, my son has been discharged.from kkh n has an.open apptmt of 2 years.with the specialist.

Yes it's an auto immune disease., thus it's.about.boosting their
Immune system.with nutritious.food. Slowly slowly ok?

If u need any clarification, do email.me ay [email protected].

Hear from.u!

Su
 
hi all. is this thread still active? my 3yo boy was diagnosed HSP on Monday and discharged yesterday. so would like to know how are the kids doing now? is this a life time disease which cant be cured at all?
 

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