While I have been working away on some beautiful beach family photos I realized that I never shared my cute crew from our visit to Virginia last November to Grandaddy’s house. So here you go – a quick snap of my crew and our entire crew together for the holiday (done with a tripod and a remote trigger for those big group shots).
Well the cardiologist appointment went very well and O’s heart looks great – just a false positive from the EKG so YAY!!!! The nephrologist (kidney specialist) we saw in Gainsville gave us all on clear on his kidneys and verified that he did not have lupus and told us the key words we needed to use to get into Rheumatology (joints/bones/autoimmune specialist)! Apparently you CAN NOT mention HSP or they will keep sending you to nephrology – you have to say joint pain!!!!!!!!!!!!!!
It took us several months (yes I called every morning to see if they had any cancellations) but we finally got into pediatric rheumatology! We had a good visit for the most part. She watched him walk/bend/run and pressed all over his legs and feet and knees. She found that he is favoring one hip and walking a bit funny, that he has flat feet and that he has some muscle weakness when he bends (his knees bend in toward each other vs straight ahead) and that he has tight achilles with pain when squatting. She took x rays of both feet and ankles and we are waiting to be scheduled for an MRI on the feet and ankles as well. She is looking for arthritis/inflammation though she says his symptoms are not in keeping with the typical arthritis since his swelling comes and goes and does not have a “hot” feel to it. She is thinking that maybe his tendons are connected to bone? In the meantime she would like him to do physical therapy to help strengthen his muscles. She feels that the month of not walking (he didn’t walk for 4 weeks during the beginning of HSP) and then the following months of little to no activity (he missed 44 days of school – some of those days he did go for a few hours but came home early) and sitting in a recliner or bed has left his muscles weak.
Gluten Free – out of desperation I decided to give the old gluten free a try again. Since let’s be honest, I didn’t try very hard/very long before. If I’m being honest with myself – I don’t want it to have any effect on his health and I don’t want him to have to eat gluten free. He’s been through enough already! After several weeks of gluten free – I have to admit that he is doing better than he had previously. Could this be a coincidence – sure! But it’s the easiest (ok – not that easy ) and least side effect thing we can try right now. He still gets some abdominal pain but not as severe and the headaches and joint pain have gotten better. We let him cheat a bit this last week and it didn’t happen immediately but that evening or the next day his stomach would hurt (keep in mind he hasn’t had bathroom issues to make us think he had any food intolerance)….sooooooo…..why not just keep the with the gluten free for now.
Overall – all but one Dr. says that his abdominal pain, joint pain, headaches and swelling are not from HSP but that HSP possibly triggered some other autoimmune disease. We disagree since he basically had no health issues before the HSP. The GI Dr. still wants us to do an endoscopy and colonoscopy but we are skeptical since O would have to be completely put under anesthesia and we almost lost my mom in December to a “routine” colonoscopy. We are still weighing the good/bad of this recommendation. They mostly want us to do it to rule out other possible issues but we would have to put him back on gluten for at least 2 weeks before the scopes so they can test his tissue for gluten issues.
Until this morning we did not have a full family history from my husbands side of the family. After contacting his Aunt we learned that my husband’s mom had arthralgia (form of arthritis) at age 13 but was treated and recovered. Unfortunately her father at the age of 17 (my husband’s grandfather) had a sports injury followed by 3+ weeks of high fever that turned into the beginning of his battle with debilitating juvenile rheumatoid arthritis of the spine, shoulders, hips, and knees. This caused him to spend lots of time at Johns Hopkins (and included two metal rods in his spine) – a battle he fought off and on for the rest of his life. I’m trying to not freak out and go down that rabbit hole – trying to be patient and see what the Dr. has to say from his xray and mri. Unfortunately it will take several weeks to get in for an mri (apparently it takes a long time to get insurance approval) and then they only review mri’s twice a month 😦 We are stuck with the waiting game for now (and some physical therapy!).
If you are a parent with a child going through this – keep a log of EVERYTHING! Try to get and keep copies of all recommended procedures/dates and lab results. Each time we see a new Dr. they seem to not have all the lab results or information so I’ve started trying to keep everything in a binder. This is like a job – trying to get all the forms and records from each provider and they aren’t easy to obtain half the time but it’s worth it – this has been a long journey and we are STILL trying to get all of my son’s lab results in print. They will ask you for dates of when each lab was done and what labs – like you are a tech and have any clue what these lab results are! It’s hard and frustrating but the more organized you can keep your information (think timeline too) – the easier. I find that sometimes I forget to mention something to a Dr. because I forget myself!
Thanks for taking the time to read this super long update!
Since I last posted, we have seen the Gastrointestinal doctor who ordered all sorts of tests for O. Last week he completed an upper GI barium x-ray along with a complete abdominal sonogram of all his organs. He also did stool samples for all sorts of things like parasites, h-pylori, blood work for pancreas and everything has come back normal with exception of an EKG that was done. The EKG was only done because a medication the GI DR. wanted to use required it. The EKG came back with a possible Left Ventricular Hypertrophy (LVH) so we see a cardiologist next week to follow up on that! I’m trying to not get to worked up over it since apparently EKG’s can give false positives and we have no family history of LVH.
Today we travel to Gainesville to see another Nephrologist. We were not allowed to see the Rheumatologist we were hoping to get into. Apparently the Rheumatologist will not see us unless the nephrologist deems us worthy 😦 So frustrating!!!!!!!!!!!!!
He has now missed over 5 weeks of school 😦 Luckily our school year ends soon and even though he doesn’t feel well – he’s pretty content when he’s home.
Hey there everyone! Sorry I have been so quiet lately. The move of course has kept us crazy busy but along with that – my 10 year old son was diagnosed with Henoch-Schönlein Purpura or HSP (a form of vasculitis /auto immune disease) for short in early December. I can’t even begin to explain how crazy this illness has been for poor O! I’m writing this to help others out there find some much needed help and resources. Although HSP only effects about 13 in 100,000 – there is little information to help the parents and patients! So – here is our story (sorry – long post but parents dealing with an child with HSP – it’s helpful to know exactly how things went for each case)
In early December O (10 year old boy) was complaining of abdominal pain and his underwear had been leaving marks on his stomach. In general he just didn’t seem to want to play much either. We just assumed it was food related or a bug and that he had outgrown his undies! This went on for a week or so until the abdominal pain had him bent over in pain. We gave him advil and the next morning he seemed to be doing better. That Monday Dec. 7th – he went to school, returned and went on a playdate. That afternoon he was complaining about his legs – it looked like he had gotten himself into a bunch of chiggers! We went on with our evening but the rash/chiggers (so I thought) kept spreading and went all the way up both legs and onto his buttock. Both my husband and I thought maybe it was something like chicken pox?????!!!!???? So off to the Dr. we go on Tuesday. We noticed that his feet has started to swell as well.
Dr. diagnosed him with Henoch-Schönlein Purpura and sent us up to the children’s hospital for blood work. In that short period of time – his feet had swollen so much that I had to carry him on my back from the parking lot to the hospital. Thank goodness, though he was scared, he was in good humor and we tried to make it fun… though getting blood drawn is absolutely NO FUN!
So begins the nightmare of the next 4 weeks. We were told that HSP lasts 4-6 weeks and just keep him comfortable with advil/tylenol and lots of rest. No one prepared us for how awful it would be! The abdominal pain was so intense that he would just whimper and cry all bent over, the swelling was obnoxious and moved around about every two days – starting with his feet, hand, wrists, elbows, knees, ankles, lower back, head, TESTICLES and lower back. We went on Dec 8th up the the children’s ER with swelling on his lower back (he couldn’t even stand up straight!). Luckily the Dr. had some experience with HSP and was helpful (funny side story – the er nurse asked him to rate his pain on a scale of 1-10, 1 being a paper cut and 10 being Jesus nailed to the cross…. such and odd thing to say to a child!)- in the end we did an ultrasound to make sure it was just edema (it was!) and he sent us on our way with a script for Tylenol with codeine (this was an absolute sanity saver! He got so much worse from there and I don’t think we would have been able to keep him from going back to the hospital without this!). For the next 4 weeks we kept his legs elevated as the rash/purpura (it’s not a rash at all but leaky blood vessels) and swelling were so bad that he didn’t walk for almost 4 weeks. The tylenol with codeine helped with the abdominal pain (usually got worse at night) but we also gave him benedryl to help his fall asleep. We used a cortisone cream on the purpura that eventually got scabby but was often itchy and we used a heat pack on his abdomin. Also the rash/purpura moved onto his arms and belly and face and he also developed nose bleeds around 2-3rd week with blood shot eyes. He also had very foamy urine (make sure to check their urine and poo for blood).
On top of that – we purchased and did daily pee checks – this is VERY important as HSP can effect the blood vessels of the kidneys as well as the intestinal lining. You use the pee test to see if there is blood and protein present in the pee. It’s a super easy test and I highly recommend you get some to do at home. The Dr. did a weekly check as well for the 1st month and then monthly checks for the next several months. It’s also important to monitor their blood pressure to insure the kidneys are not in distress. The school nurse (if your school has one) and the local fire department can help you with this as well – keep a daily journal with all symptoms/treatments/blood pressure and urine results and take pictures! Keep them hydrated!
O’s urine ended up showing blood and protein in it around week 3 so we were referred to a pediatric nephrologist (kidney specialist) to help us monitor him. Basically he said that as long as the rash/purpura and other symptoms were getting better (at that time they were) that we didn’t need to do anything more than continue to monitor his urine and blood pressure. He may have another flare up in the next few weeks but that was ok as long as he didn’t get severely worse and to only use Tylenol since the HSP is now involving the kidneys (it’s not advised to use advil/ibuprophen when the kidneys become involved – ie blood/protein in the urine).
After the 4 weeks O did start getting better but would have various days were his abdomen hurt or his feet/knees would swell but overall doing pretty good until sometime around the end of Jan he started complaining more about abdominal pain feeling dizzy.
Feb 25th – Dr said he felt O was having a reacurance of the HSP and suggested we start 5 days of prednisone. We decided to put off the steroids for a bit and see if it would magically just get better! It did not. The next week he was complaining of nausea. Knees and feet swelled a bit after trying to run the mile in PE – removed him from all physical activity from school. (FYI – we ended up getting a form from the school nurse to put on file with the county to let them know of our ongoing health issue so that the county wouldn’t send us ugly letters about him missing so much school).
After a very mild spring break at the beach – O had some form of abdominal pain the entire week and just not a lot of energy. When we returned home we decided that we needed to give the prednisone a try because this clearly wasn’t going away on its own.
The 1st day on prednisone he was sent home from school – his abdominal pain seemed worse, severe headache and knee join aches. Next day – same thing – sent home from school within two hours. We go back to the Dr and they are just stumped. Usually prednisone helps in a very short amount of time so we have now stopped the prednisone. We did more blood work and now we are looking in various directions to make sure there isn’t anything else going on besides the HSP. We are going to a GI doctor and we put in a referral to a pediatric rheumatologist. In the mean time they have put him on a daily dose of Nexium and Neproxin (aleve for kids). He pretty much missed school all last week but luckily with all that rest – he is feeling pretty good this week (though we have resorted to using the pain scale of 1-10 to help understand how he feels each day)! I find that he seems to do worse after being active – even just playing in the pool or at the beach for a day -.
So – if your child has been diagnosed with Henoch-Schönlein Purpura – there are two groups on facebook that have been so VERY VERY helpful! AND KEEP A JOURNAL!!!!
Also – here is a link to the pee test strips: We used the 10 parameter (top option – it give you 100 test strips)
Also – I can’t tell you how much we have used this heat pack – it has been well worth the money and used almost nightly for 4 months now! We heated it in the microwave for 2 minutes.
When O’s pee was showing lots of blood and protein – I started giving him a multivitamin with fish oil (advise from another mom in the facebook groups) and coincidence or not – his pee went from +3 or more to just trace amounts of both blood and protein within a week (after months of +3 or more) – the dosage says 4 chews per day but I only give him 2, sometimes 3. They taste pretty good – not fishy at all.
Pray that we are able to get into the pediatric Rheumatologist in Gainsville soon – even though he is feeling better this week, he still has some form of daily abdominal pain and has missed over 3 weeks of school (would have been 5 if it hadn’t been for Christmas break falling right after he had been diagnosed). Sorry this post is so terribly long! Best of luck to anyone dealing with HSP! Its just awful!
Other general notes – we took him off cows milk, anything with food dye, only white cheese and while he was having kidney involvement we limited any processed meats like deli meat/ham/pepperoni/hotdogs, all dark soda (yes we allow our kids to have sodas as a treat on the weekends) as well and also tried to make sure all meals were fresh/not processed. We included good foods for kidneys like cherries and eliminated bananas etc. We even tried gluten free (though that was short lived and hard to do while we were also doing no deli meats). Overall the only thing we feel makes him feel notably worse is sugar/soda. I find it hard to keep a child hydrated – so during the worst of it we did 1/2 gatorade to water and finally we found some naturally flavored sparkling waters that he likes. Anyway – some other people have said gluten free helped them….something to try if you can/willing. Oh and we even tried the Bragg’s apple cider vinegar but he hates it! (well what kid is gonna enjoy taking a spoonful of vinegar! we even tried mixing it – no go and Bragg’s sells a limeade made with it – no go for him but I drank it and it was actually pretty tasty)
Feel free to email me firstname.lastname@example.org if you have questions/need help! Thanks for listening!
I hope everyone out there had a wonderful holiday season! Have you set your 2015 goals yet? I say go big or go home 🙂 Ha! Well we are definitely making some changes around here and to start – we are having the wonderful Ash of Laynie and Belle design us a new site. So until then, we will not have an active website. In the mean time I have added a LOT of new content to the menu (see above) to help answer questions about pricing etc that you would normally find on our website. Oh AND I added some other new goodies as well. I’m certain that some of this new content is riddled with grammer and spelling errors as I am a horrible word smith. Please email me when you find them so I can correct them 🙂 Muchos gracias mi amigos!
Here is a quick little share of my wonderful fall family photos that my AWESOME friend/assistant Chaeli did for me 🙂 Isn’t she the bestest! XOXO Love you Chae!
We decided a few weeks ago to take the boys up hiking in the mountains and decided to hit Linville Caverns on the way. The caverns were pretty fun but not as big as what I had thought they would be. Still a good little family “something” to do! We went on a Saturday around 1pm and there wasn’t much of a line so we didn’t have to wait long at all! The tour took about 20 minutes or so and was dark but not too dark and had some tight spots but nothing too terribly tight (a few tight spots you could do if you wanted but not everyone did). They do have bats in the cavern at times but when we were visiting – early Oct – there weren’t really any. They do have a stream that runs through the cavern that had a couple of fish in it – kinda cool to see. After the tour they have a cute little souvenir shop you can visit.
This to know:
Bring/wear a jacket
they ask you to step in a 10% bleach solution when you exit (it’s shallow/shouldn’t splash on you) and ask that you wash all the clothes you wore there. It said nothing from the cavern was harmful to humans but can be harmful to bats in other areas? Something like that – so maybe not wear your brand new favorite jacket…
I totally forgot to charge the battery in my camera so this is a mix of Fuji x-pro 1 pictures (no flash- iso all the way up) and some cell phone images 🙂
After you visit the Linville Caverns – it’s a short drive to do a bit of hiking (free or donation!) at the Linville Falls. Perfect place to see some fall leaves right around mid Oct. We were there the beginning of Oct and they were just starting to change. We did two of the hikes – the first one was super easy but not as pretty as the second trail. We never got to do the 3rd trail because I fell (typical if you now me) and sprained my ankle pretty bad….not because the course was hard – I just miss stepped but boy was it pretty! (sorry – these are all cell phone images)
I realize I am way behind in blogging out our recent snow days here in Charlotte but man our house has head the plague of sickness for the last month! Still – I wanted to take a quick moment and share what we did during our snow days here. Think snow cream and paper masks that the boys got for Christmas from their uncle and mom over here with a new camera to test out 🙂
I have to say that I am completely in love with the Fuji x-pro 1 but man has it had a bit of a learning curve for me! Fun and frustrating all at the same time!!!!!!!!!!!!!!
It’s almost over….summer break. Part of me is sooooooooooo happy to get back into the routine of things and part of me is sad! We had a very busy and very fun summer and I hope you all did too! Of course the sun didn’t come out on the day that the ice cream truck comes around AND I have my camera in hand…of course right?!? but hey…at least I got to capture a little piece of summer fun with my littles 🙂
I’ve been seeing a lot of photographers playing around with double or multiple exposures recently so I thought I’d give it a try this past rainy week! It proved to be pretty challenging! These are far from perfect but thought I’d share anyhow!
Oh my – WOW! What a fun day I had with my two older boys yesterday!
A couple of days ago my youngest got out all my silver/pots etc and they all decided to play the drums/have a marching band (I’ll see if I can upload that video I took on my phone) so anyway….O fell in love with this gigantic wooden spoon that I have and of course asked if he could keep it. When I told him he couldn’t keep it but he could play with it…well that’s when he came home yesterday and decided that he wanted to pretend to make some soup. After fetching him a large pot, he is pleading with me to PLEASE PLEASE let him make a real soup! Lucky for him I had just stocked our pantry so I thought….why not! So that is how our adventure began! This was not planned, my house is not cleaned, my floors are dirty…. but man it was fun and they were so so proud of themselves. We even ate the soup for dinner that night with some yummy grilled cheese sandwiches. Aside from being a bit on the peppery side – it was pretty darn yummy! You’ll see the ingredients they used and you’ll see S is making out the recipe in case anyone wanted it! They are super excited to share these pictures with everyone!