Newly Diagnosed 3 year old daughter with HSP

Allergies, blood and immune system
1

Just looking for some information for other parents of children with HSP. My daughter who is 3 years 9 months old has been diagnosed with HSP two days ago. She was complaining of sore ankles after pre-school and I noticed red spots all over her legs when I looked at her ankles. We decided to take a visit with our family Doctor, who was able to tell me that it was HSP but sent us for immediate blood work/urinalysis, and a immeditate referal to paediatrician the following day. The paediatrician was able to do a full physical and complete the diagnosis.

Bascially I am looking to see how this disorder progresses. She has the red spots on her legs, buttocks and back; swelling and brusing in her anlkes. It has only been two days since this has started and I'm wondering if this can get worse, or will she maybe just have a mild case? Possibly no affects to her kidneys?.... Thank you

2

Hi Angela

My daughter, 4yrs, just got this about two weeks ago. Her doctors did the same thing with the blood work and urine sample. She was given nothing for pain or swelling.

It started with us going on a family hike Sunday. Monday morning, she had what looked like little mosquito bites on her ankles. No concern. Wednesday afternoon, she walked out of school and within a half hour, could not even walk! The swelling was unbelievable! And the bruising! And those little mosquito bites? Well, they were actually a severe rash going up both legs, to about her knees. So we took her in and the doctors did the blood work and urinalysis and mentioned it was HSP. We took her home, made her comfortable and gave her fluids.

By that Friday, the swelling was going down, however, she had now had such severe pain in her lower back, we couldn't even touch her. Few more days go by, her other foot becomes swollen, bruised and the rash had spread. Few more days go by, one of her hands was swollen and painful to the touch.

We are now on almost three weeks and the pain is gone, the swelling is gone, most of the purple bruising is gone, and the rash is barely visible.

Her doctors have checked her urine three times throughout all this and it never showed any signs of blood so, so far, no kidney issues. We are to watch her really good for another 6 months in case it comes back. I have read that it sometimes does come back and is usually triggered by a cold. :-(

It sounds, from reading on this site, that my daughter had a mild case, but I know one other person, an adult, who gets it all the time, and is usually very severe. One thing they told me, is it gets worse before it gets better, unfortunately.

3

Hi Angela,

Sorry to hear your daughter has caught HSP.

My daughter was 11 nearly 12 when she developed HSP post severe respiratory infection. She is now 13 and it has been a rocky 14 months. She had the rash very badly initially, protein and nephritis in the kidneys, swollen joints and stomach pains. She has been fairly weak subsequently for the last 14 months...sport was out of the question and she has missed lots of school. In feb half term she had a very bad relapse....this time no rash but chronic fatigue and excruciating stomach pain. 5 weeks on and she is slowly getting better. The hospital rushed a scan through and discovered nasty shadows on her bowel...they think HSP has caused Mesenteric lymph adenitis...basically lymph glands have become extremely inflammed due to the HSP . It has been a nightmare....and actually her condition is worse than the original onset of HSP all those months ago. I can only hope things will improve but i think through my research that HSP is alot more vicious and aggressive than the consultant ever stated in the beginning. It would seem the younger the sufferer the quicker the recovery...certainly the onset of puberty in the mix has made the situation much worse for my girly.

Every case is individual some get it worse than others...just be aware that everything has to slow down to allow a full recovery.

Best of wishes to you and your daughter for a speedy recovery. X steph

4

Good luck to you and if you need anything, we are all here for the same thing, so please ask away! I'm still educating myself on this horrible disease also. Hope your little one feels better soon :-)

5

Thank you for replying. It was Wednesday of this week, I picked my daughter up from pre-school and she said her foot was sore. Thought nothing of it cause she was outside running around with her friends. After about an hour she couldn't even walk her ankles were so sore, then i had a look and noticed the swelling and red spots. So we had our drs appointments and yesterday (thursday) she was walking around fine, little swelling and more spots up her legs/buttocks. Now today swelling not as bad,  still a lot of red spots, little pain in her feet and now I noticed bruising around her ankles. We go back for more blood work/urinalysis and another appointment with paediatrician this coming week. I really hope this  a very mild case and does not get any worse then  is now!! Thanks again for your response

6

Hi Angela

Sorry to hear about your little one. As I have researched the younger you are the quicker it seems to go and the simptoms are not as bad as teenagers. Still is not a pleasent virus.

My daughter has had HSP since last September. She is now off the steroids and MMF and the water tablets since mid feb. The HSP came back full force however since 24th Feb she just has chronic fatigue and muscle pain now and again. She has just got her period after 8 months. She still has +4 of blood in her urine and +4 protein an albumin of 30 and creatin around 60 She has missed so much of school as her concentration was serverly imperred. The school are great and very understanding. Although with all the drugs she has put on 20kgs the drugs have not helped to supress her imune system. Any further drugs will give her instant diabetes and guranteed kidney failure on the bright side the HSP may be eradicated! As you can imagine my daughter would prefer no meds and hopes HSP will die on it's own and the kidneys filtration system will eventually sort it's self out and if not she will still have to have a kidney transplant but at least the doctors have not brought this on. My daughter is fed up of being a human guinea pig. My only problem with HSP is my daughter for the past 8 months still regulally vomits. She has had a camera and a biopsy but they can't understand why at least once or twice a week she is sick and it wipes her out for 48 hours. We are back at GOSH 7th April for more bloods to check if her creatin and albumin has stabalised and keep the trial and error of toxic drugs at bay.

7

Oh wow, your daughter has had it hard for sure! Hope things will turn around for her! How old is your daughter?

8

She was 13 when it started and now 14. It's such a horrid virus with no cure and no meds help it. The meds GOSH are tring to trial with her are to try and find out which part of the imune system is actively atacking her and try to shut it down, however the side effects and their outcome are worse, but as her doc said he doesn't want to be seen as not doing anything and has constantly said he has no idea if they will work and this is just trial and error. There is no confidence given to her only the facts of the drugs side effects and their ultamate end results of kidney faliure! There is no light at the end of the tunnel! It is heart breaking to watch and be helpless to do anything. As a parent you want to help but when there is no hope from a consultant it is really hard to stay upbeat and happy, but I do and I stay as positive as possible for her sake she is too young to give up!

9

Hi! Michelle and my son Anthony was diagnosed with HSP at four years at two months old. He had one outbreak and did not spread to his kidneys. About two weeks later she had another outbreak on his skin, but nothing in the joints or kidneys. He has been urine testing every two weeks since December 2015, we have had false positives that have been scary, but nothing for real. Now our dr believes we will see signs of it attacking the skin or joints before it goes to intestins or kidneys, so we watch and stay vigilant. He carries on normal activities and life is good.

When I was in the stage you were I was afraid to breath, that something really bad would follow up with this diagnosis. Now I consider ourselves lucky about this diagnosis coming about so quickly and that it was nothing more!

Email me if you want to chat- our kids are close in age smile.

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10

It will take about 6 months of monitoring. Hopefully she will be free if most of the side effects, but have a read through this forum for lots of helpful information on how to deal with it.

11

I was 15 years old when I had HSP. All the usual symphtoms and an intestines surgery ...not a pleasant experience at all. The good thing is that it has never come back, no side effecs besides the surgery and I have an absolutely normal life: I practice sport, I hike, I gave birth to a child. In my opinion, the life style of former HSP patients is very important: to eat well and only healthy food, to practice sport, to take care not to have so many flues, to eliminate chemicals as much as possible, to have enough sleep...I even now experience tiredness sometimes and I can not explain it because I don't have a very stressful life or job. In my opinion HSP is sometimes just a sign that your body is giving in order to slow down...Unfortunately is such a painfull disease and the psychological consequences are so many. Even after 18 years of normal life I have nightmares about it...

12

My son was diagnosed with hsp in febuary this year and he had swelling to legs, knees, ankles and hands/wrists as soon as 1 swelling went another started and rash was quite bad also. I thought all was good in past fortnight as everything seemed to have cleared and last night i noticed swelling again to his knees and rash as started back up. sad

13

Wow..... I say this as it has just occoured to us that my daughter's common denominator throughout this HSP has been her constant vommiting before during and up to 10 days ago.

We realised that usually if she was sick she would eat toast, white bread as I was brought up with the saying "you can't throw up on toast" the common denominator has been white bread. We have stopped white bread completly.

We have worked out that it is not the gluton or the flower but the yeast. For the past 10 days no vommiting. We are back at GOSH next week and will find out what alerhy tests can be used to confirm our theory.

Supprising the 8 weeks we spent at Oxford John Radcliffe and the food diarys we kept, the gastro team never suggested this. An camera down her throat, genaral anasthetic nd biopsy yes, but no obvious alergy tests were thought of which would have been quicker and much less evasive!

14

So sorry Amina how old is your son? HSP comes in waves. Just when you think this horrid virus has gone and life seems a little better it comes back. My daughter has had sveral waves over the past 7 months.

If I could I would post some pics. I have kept a photographic diary as most doctors have not seen HSP and ise your kid as a guinee pig to show other doctors. My daughter was fed up with teaching them so I would just show them pictures. This also saved the ignorent ones the need for constant touchong, pinching and proding!

15

Hes 4 years old and yes i have also got pictures. Hes blood pressure is at a normal as he as it checked every week and daily urine checks

16

My daughter's blood pressure has been normal all of the 8 months she has had HSP but her Urine and Protien have always been +4. However as they don't know if she has +20 or +5 it is impossible to know if she is getting better apart from blood tests.

17

Hi Angela: my daughter is 4 and was diagnosed about two weeks ago. We have not gone more than 3 days without vomitting. Was wondering what your experience has been, and if your daughter is getting better. if anyone can give suggestions for the nausea and vomiting, it would be greatly appreciated, as I am writing at 3:00 a.m. in between vomiting spells.

18

Hi Carlos, so sorry your daughter has HSP.

My daughter is 14 and was diagnosed last September.

We as a family have worked out that my daughter had a sudden intollerence to yeast products which seem in a large part to have awakened/triggered HSP.

Although the Ige test was negative to yeast, it only shows positive if you have an immediate reaction like peanuts so Guys Hospital informed us.

My advice is write a food diary each day including times and each time she is sick find the common denominator.

The doctors spent from last September through to end of march this year blaming HSP for her constant vomiting even when on a high dose of steroids from Nov through to Feb this year.

HSP is like cancer, find the trigger and you can help kill the virus.

Since the end of march till now my daughter has only vomited once when we forgot to ask the ingredients used at a fairgrounds burger restaurant.

As HSP was allowed to survive for so long my daughter has developed Nephrotic Syndrome and gained 20kgs in water weight, one not so happy teenager.

She missed nearly a whole year of school to because of the vomiting, headaches and fatigue.

She still has the fatigue and headaches but since being off all meds since February, the lights are on and my child is alert and spending this summer holidays catching up with the years missed school work.

Good luck and do as much reaserch as possible.

To quote a recent consultant's comment to my family... Years ago if we were presented with a new illness we would be fighting over each other to research it, now if it's not on the computer with detailed instructions, we are not interested and we are not paid enough to bother!

Wishing your daughter a speedy recovery.

19

Thank you for your reply I wish your daughter the best of luck.

20

Hi Angela,

My daughter, whose five years old, was diagnosed with HSP with kidney complications as of June. It has been a tough road. My daughter started complaining out of the blue of her ankle hurting her, and we made the assumption that maybe she pulled a muscle while playing at the park. Thursday night, the next day, she still refused to walk on her ankle, and urgent care diagnosed her with the same assumption we had. The next day daycare called me since she couldn't walk again, but only to find bruises along both ankles. Took her home to rest and within four hours, the bruises overtook her legs and arms. When we got to the ER, they immediate said we need to admit her, and by morning we got confirmation on the HSP with severe dehydration. We were released on Sunday around 2pm, and within a few hours, she took a turn for the worse. We were back at urgent care, ambulanced over to the ER and readmitted into the same hospital due to respiratory issued (blamed on a secondary infection and her lungs were leaking fluid possibly from her IV take in the previous visit). After a day in PICU, they decided she was in the clear to go to a regular floor. By Tuesday, she looked like she could be released to go home, but that night things took a worse. Her urine test came back showing the kidneys were in high distressed. Her kidney specialist decided that morning that we needed to do her kidney biospy as soon as possible. By Thursday am, we found that the initial test were okay looking but by pm, an IV steroid was needed. We ran into complications with the IV, so by Friday AM, the doctors sent her home on a steroid treatment with a dosage much higher than one they prefer to do (90mg).

It is now almost two months after the fact, and we are still on a high steroid dose (40mg) since the test don't seem to want to favor improvement they would expect. Her life is now revolved around (3) blood pressure checks a day, and five regular medications she has to take in order to make sure her body doesn't reject the steroid or affect her blood pressure too much. She has a third blood pressure if her blood pressure goes over 120. We are on a second attempt of the original blood pressure medicine first prescriped when we left the hospital. Lisinopril has a side effect called Hyperkalemia (overdose of potassium in your body). She also only eats up to 1500mg of sodium a day due to the steroids...thankfully she likes healthy stuff and I've been creative with our meals as a family so she doesn't feel leftout. It's honestly no fun, but if we don't follow through with the medication, her low sodium diet, and blood pressure monitoring, she could still be at the hospital. With everyone keeping an eye out for her, we have been able to make sure if she has a flare up, we can get her into the doctors ASAP. I pray everytime we have a random urine analysis and blood draw that we get good results...last visits took a turn...hoping her test today comes out with positive news.  

We got lucky enough that the kidney complications were detected early on and we took her to the best children's hospital though a hour away, but weren't lucky to enough to walk away without the kidney complications like others. This disease has very little known about it when it comes to why it affects the people it does. It's like HFM (Hand-Foot-Mouth) Virus...you don't know you have it until it's too late. As the doctors tell me, each patient is different. Some walk away with just the bruises, and some have to deal with the kidney complications. The only thing you can do is monitor her, and as long as the doctor(s) continue doing the blood work/urine analysis, she's in good hands. I hope your daughter gets lucky enough with a mild case. I wouldn't wish anything my daughter or my family faces today onto anyone else.