Hi,
My 11 yr old daughter has had HSP for around 2 months now. Most of her rash and other symptoms have now receded but she still has bad abdominal pain and a little joint pain. I'm trying to check whether there are any ways to alleviate the pain for these symptoms or if anyone has any tips to manage these better. She has missed a lot of school and I'm trying to get her back to school so that she does not fall behind. All suggestions are welcome.
Hi Arnie66-
My 5 y.o. was diagnozed on 07/01/2016 with HSP with kidney complications and a long list of other issues. Seven months later, we are off most of the medications and her kidney has resumed proper function with the right medication. Yet, we experience the same side effects until this day. For the joint pain, the doctor will tell you that a regular dose of pain medication once/twice a day (usually around the time as the pain appears), and to make sure they are drinking enough water. For example, my daughter has to drink a min (2) 20 oz water bottles a day to keep most of the pain away, and she takes the recommended amount of Tylenol at nightime since her pain is dominant at that time. The reason for the importance of the water intake is because if you're body feels dehydrated, it can cause body or joint pain. Lack of water will cause joints prone to pain ache. My daughter complains about the same joints every time, and these are the first joints inwhich were affected by her HSP. Her symptoms were her left ankle was hurting so much that night, and within 24 hours, she was unable to walk once the right ankle starting hurting.
For the tummy, if it is a tummy ache only (upset stomach) try ranitidine. It's an OTC heartburn/stomach acid reducer. The usually come in dosages of 75mg. But for this part do NOT consider this professional advice. Tummy issues vary among each patient. This is only a recommendation. If the pain is not associated with the tummy aches, then a doctor definitely will have a better solution. She was more on this medication because of the multiple medications she was taking that could cause tummy aches.
I do highly suggest that you take her to see specialist if she is missing a lot of school. The ped office cannot do much to assist, but if you see a joint/kidney doctor, they may be able to assist. I know not all cases have specialist and the ped office working with them like in my case.
I hope that your daughter feels better soon! I'm hoping by having my daughter in her study that we might get more answers on this autoimmune disease one day.
Hi Arnie, I'm very sorry you and your daughter are going thru this terrible thing. Your not alone with your worries and questions. My 10 yr old daughter who's now almost 11 was diagnosed nearly 6 months ago with HSP she is still having debilitating stomach pain, back pain, body aches and joint pain, swelling and at times breaks out in hives. She has seen multiple specialists with the most recent being the rheumatologist a second time because of the swelling and joint pain. His recommendation was 20 min a day non impact aerobic activity 5 days a week and of course lots of water. As for the rest of her symptoms we are to keep a diary of headaches, body aches, take probiotic, no dairy for ten days ( trial ) Aleve for ease of pain. So far nothing has changed for the better. I truly wish I could share something positive. Like you I worry also about ther amount of school my daughter is missing. She was out on Monday again and concerned she may not feel well enough today as she had a really painful night. A.M. and P.M. present the worst of her symptoms. My prayers are with you and your daughter and for all of us seeking answers to help our children through this very challenging and debilitating disorder.
Did you try Eumovate/betnovate fo the skin rash/joint pain?
Hello
I'm sorry to hear your daughter is suffering with this awful illness. My son who is 16 started in Nov 2015 and is still getting joint pain, intermittent abdominal pain and the rash can be bad one day and them few days later look a lot better. Saying that he is much better than a year ago. Finally got a rheumatology appt next week and dermatology in March.
Anyway, for the abdominal pain try Ranitidine that's what my son was given when he's been hospitalised (4 times) and it seems to work. I then keep him on it for a few days. Probiotic yoghurt every day. For the joint pain if it's swollen joints use ice but if muscular use heat and gentle massage of the muscle.
Hope she doesn't continue for too long. It really is a case of take each day at a time. Good luck
Hi arnie66
I feel your pain!! I'm going through a similar thing. My daughter who is 8 was diagnosed four months ago and has had four admissions. She has had bleeding in her small bowel constant swelling in different parts of her body and the rash. Everyday she has pain in her stomach and the swelling, I often have to watch her crawl around the house because she can't put her body weight on her feet and legs...so upsetting to watch! She was put on a high dose of steroids for six weeks which suppressed the HSP but since finishing the steroids it's back. So frustrating all i can do is keep her legs up, use ice packs and De-Gas tablets that help a little for her bowels.
I'm at a bit of a loss also...it's helped me reading other people's replies 
Hope your little one improves soon!
Hi, I am in the middle of a bad bout of HSP, and my doctor offered me painkillers. I refused the painkillers as I can generally manage with a high dose of Ibuprofen. Having said that, I am an adult, and you might want to ask your GP if they can prescribe anything for the pain for your daughter. I am so sorry that she is suffering with this horrible disease at such a young age.
Maggie
How high of a dose? The issue with the steroid could be that they took her off too quickly. My daughter started at 90mL/day (30mL @ 3x/day) back in July 2016, and we just got off the steroids 01/13/17. As much as I hate steroids and the side effects (especially the "attitude", the steroids was the only medication that seem to help improve her condition.
It sounds like the doctors were trying to keep her steroid use at an "acute" level, which is short-term use of steroids of six weeks or less. After six-weeks of steroids, it is considered long term use of steroids, and considerate more side effects including b/p issues, constant stomach aches not associated with the disease, concerns over exposure to certain diseases such as chicken pox, dietery issues, dependency on the drug, and so much more. Most doctors don't like long-term use of steroids, especially with children. As I found out from both my daughter's specialist that the long term use of steroid is the only way to go, especially if the child has suffered any severe inflammation (ex// the kidney in my daughter's cause). It definitely helped with her joints healing just enough so we weren't dependent on pain mediciations every day.
As a parent I did find that increasing her water intake plays a big role in controlling her joint inflammation while on and after the steroids. My daughter got used to getting only fresh food, and very limited packaged food due to the steroids, but I found out that certain fresh fruits and veggies made a huge difference on how she felt most days. Certain foods help with controlling inflammation of your body. I refuse to let her eat certain foods to this day, and still teaching her the right decisions on what she should eat so she makes the right choices ten years from now.
Best of luck to you and our daughter (as well as everyone else posting on this site). Prayers!
A high dose of Ibuprofen is also a painkiller, and it can cause much side effects as any other painkiller.
Thank you all so much for the replies/suggestions. We have now started her on ranitidine as we suspect that the tummy pain could be due to heartburn and this seems to help. The interesting thing was that her tummy pain was increasing at times when she was having food (probably excess stomach acid). I have also temporarily stopped all supplements I was giving her like vitamin C, vitamin D, L-glutamine etc to check whether these are irritating her stomach. This was interesting as the pain she has felt from heartburn before the HSP had been very mild. I'm now wondering whether the painkillers she has taken for tummy pain in the past 2 months has caused this heartburn. My daughter had a kidney infection from the HSP and though she was not on steroids, she had taken acetominophen many times for pain relief over the last 2 months for the stomach pain/joint pain per the recommendation from her nephrologist and pediatrician (we have kept her off ibupruffen due to the kidney infection). I'm wondering whether the painkillers killed off some good bacteria in her gut over the period.
Thanks again for the suggestions - I have started my daughter on ranitidine and will introduce probiotics after monitoring her condition for a few days. Also for whoever it might help, my daughter had a few acupuncture sessions and that significantly helped reduce her joint pain in her knees/ankles and stomach pain due to stomach cramps (not the latest one due to the heartburn).
Thank you. My daughtes is also on a strict diet of fruits/vegetables/organic chicken and is off all dairy/gluten/sweets. We have started ranitidine after checking with her pediatrician. You should check acupuncture for her joint pains - That really helped reduce my daughter's joint/knee pains.
Hi Maggie, Thanks for the reply. Some doctors advise to keep off ibuprofen if there is kidney infection also from the HSP. We have used acetominophen to manage my daughter's pain even though acetominophen (unlike ibuprofen) does not have any anti inflammatory properties.
Hi Rocky, Thanks for the reply. We have not tried any corticosteroids yet as her nephrologist did not want to put her on steroids. Her skin rash is nearly gone for now (not sure when it will recur) and her joint pain is also significantly reduced.
Thank you. We have started her on ranitidine and it seems to help. I tried probiotics once earlier but think I gave her a higher dosage causing her to have some stomach pain. I'm planning to start her again on probiotics soon.
Hi Becky, Can you please let me know which fruits/vegetables she found to be helpful and which foods you ask her to keep off? My daughter is also on a diet of fruits/vegetables, lots of water and some organic chicken. We keep her off all dairy, gluten, sweets and we use very little salt in her food (the salt reduction is due to the kidney inflammation). She has been eating salads, blueberries, strawberries, blackberries, grapes, broccoli and we have put turmeric & garlic when grilling her chicken due to it's anti inflammatory properties. She has also been drinking ginger tea to aid digestion. I've read that keeping off foods that cause heat in the body (e.g. pineapple, red meat, spicy food) help as hot foods are more difficult to digest. I had also put her on some vitamin and food supplements to aid digestion and detox her body but have stopped them temporarily for now as I believe that she's probably getting some heartburn currently from these supplements.
I would be interested to know what food your child has been having and what she has been avoiding. All the best for your daughter. Hope she gets better soon.
Your welcome.
I find that the strict diet has helped out just as much as the medication treatment plan she had. The long term steroid treatment had her on additional medications include a total of (3) blood pressure, ranitidine, prescription strength Vitamin D (higher concentration than the OTC vitamin D), and one other one that I'm lost in naming. They actually still have her on Lisinopril which helps her with controlling her blood pressure and helps regulate her creatinine. But also I got lucky with her kidney specialist who currently working on a study involving HSP at U of M - otherwise, most of the medical professionals were lost in how to treat her until she came into the picture.
I will have to see about acupuncture - after her two weeks in the hosptial because of the kidney inflammation and other secondary infections, she's relectuant to do some things right now. Her blood test days are my worst days.
I really hope your daughter gets better soon! As much as the doctors warn you about all the disease that you are can get vaccinated or they have non-profit research progams, no parent is ready for this autoimmune disease.
Hi, Thanks for the reply. My daughter is also on a diet of fruits/vegetables/salad and keeps off dairy/gluten/sweets. We have tried acupuncture and that worked wonders for my daughter's joint pains. She was very scared of going for her first session as she felt that the needles might be painful but after the session told me that it reduced her pain a lot. My wife and I have also not tried acupuncture before and we went per a suggestion from one of my wife's friends. We have also been to multiple specialists-I feel that most specialists we have gone to have limited understanding of the disease or the rootcause and are just treating the symptoms. We still plan to continue seeing specialists and monitor her condition using blood/urine and other tests but are now looking at alternate medicine.
I hope and pray that your daughter feels better soon.
A few things we follow in her diet are:
1. We flavor with fresh diced onion, variety of diced peppers (not spicy though). We avoid any seasoning at all, even the Mrs. Dashes is not too good for you, but an option for those who need a little more taste.
2. Cauliflower - we steam fresh cauliflower (no seasonings added ) / a little lemon or lime juice gives it just enough extra flavor for her. But if you steam it correctly, I find I don't need to add anything.
3. The dieterian highly recommended any fruits or veggies that have a high water content - CUCUMBER & CELERY came the highest recommended.
The dieterian says some fruits like watermelon don't have the highest nutritional needs but a good healthy snack if avoiding the normal package snacks.
4. Steamed Cabbage
5. Kiwi - no highly recommended if your kidney has long term issues, but since her numbers are back to normal, we have found this as an alternative to fresh apples. It also helps regulate your blood pressure.
6. As you already do, limit her protein. On top of sodium, protein even fresh can carry high amounts of potassium and other vitamins. If she does eat it, it's a little portion with fruits and veggies on the side.
7. Yourget but still have to be on the caution side if taking any type of medication that could impact your potassium levels.
8. Apples - though she struggles with missing teeth, we have her eat an apple a day. If she has applesauce at all, it has to be unsweetened and unflavored. She doesn't like the sugar additives at all with her applesauce.
9. Brown rice - our alternate to a lot of those pasta products. No white rice since white rice is basically sugar. We have tried the noodles made with veggie base like spinach, but we were advise to stay away from pasta dishes.
10. IF we season the food, I use BASIL. Basil has just enough of the sweet taste as well as an anti-inflammatory.
The best trick for my daughter is to make smoothies with both veggies and fruits that would best with her. We did find out the hard way that too much celery can take away from the other flavors. Unlike most people, I just use a little bit of water & a tray full of ice cubes to make the smoothie.
Also because some veggies have considerate amounts of sodium compare to others, my daughter has a container in the fridge that was filled with serving size sandwich bags. This way if she wanted carrots, we knew she was only get the 45mg of sodium. Cauliflower also has a higher sodium content like some other veggies.
As far as nots for her:
1. We avoid any processed foods as much as possible. I aim for fresh fruit and veggies in her lunch.
2. I avoid as much dairy and bread products, but thankfully she doesn't take sandwiches to school.
3. I avoid all sugary drinks in general. If she was having issues with her water intake, we were told to put fresh fruits or veggies into the water to flavor it; and to avoid any of those Crystal Light or other similar products at all cost. Even advised not to buy those fruit juices you would find in the fresh produce area (hence, the smoothies).
4. Most dairy products are no-no for her.
You're pretty much following the same thing as us, but each child has their own likes and dislikes. I found that the more fresh fruit and veggie diet we follow, the more she doesn't go after the normal prepackage or processed snacks and actually goes for the fruits/veggies. I also found that her ankles don't hurt as much. She dances, so there's additional stress on her ankles which are her main complaints, but the doctors warned me that her joints make take awhile to recover.
And like you asked the ped doctor, ranitidine has been used just because there are some fruits or veggies that can have high acidity level depending on you make it. My daughter loves her oranges, sliced tomatoes, etc. but if she eats too much of them, she complains. Half a tablet of the ranitidine does the trick. Unfortunately I cannot avoid some healthy foods because they are better than the alternate.
Going out to eat meant only going to one diner for us, because we are friends with the staff. The manager has a special meal that they would make just for her, and still still wouldn't feel left out. The manager only serves fresh fruit so it was a plus for us (no canned fruit).
We normally logged no more than 1100-1500mg of sodium/day, but only with the right planning. As a family of 6 of us, we as a family took on her diet as much as possible. Having a toddler means they have some needs that I needed to still address. Thankfully after six months, we have learned the basics of what products to try or stay away from in general.
True, Kidney or liver damage can occur with NSAIDs like ibuprofen, Aleve, Paracetamol/Tylenol in high doses.
Hi Becky, Thanks for the detailed reply. This is very helpful. We have been following a similar diet for our daughter but there are a number of points from your list we will try out.