4yo and temporary arthritis...anti-inflammatory help

[Grace and Granola]

My 4yo ds has just gone through an episode of a rare auto-immune response, and it's causing him to have temporary arthritis in his feet/ankles. The doc of course, recommended motrin as needed. This condition is supposed to last 4-6 weeks and may reoccur, but hopefully not. I need to find a way to support my son through the next several weeks. Today we used two doses of motrin, but I know that isn't what's best for him.

I don't know anything about arthritis, and from what I've read on this board there is a difference between RA and OA, and I'm not sure what he has. Any help would be greatly appreciated.

[purplepaisleymama]

Hi !
I am not sure how much info I can give you, but my youngest has what is dx'd as JRA, he also has an undiagnosed (as of yet) auto-immune disorder. He was on a schedule of Motrin last winter ( he is usually much worse in the colder months) and we even ended up with him taking amitriptyline for pain that was waking him in the middle of the night. He is now med free but we are expecting that he will start again soon as he is having more pain and lumps lately.

I can say that when he was first dx'd and we were given the rx I was not happy about giving him the meds, we are a very natural family, we don't vax, we eat organically and we don't use meds unless they are absolutely necessary. I did talk with the docs and they were fine with me making the decisions regarding if we would use the meds. We tried other remedies for his issues and when it became obvious that we would have to use them, they were very supportive with helping us to start at a lower dose and then gradually increase. He did need the Motrin for about 4 months around the clock and then we were able to decrease the dosage and finally get him completely off of the meds. He seems to have RA reactions ( or RA type) to allergens, in his case they are corn, soy, legumes, nuts and some other food products. The reactions can be skin ( hives and other rashes) gi (diarrhea, vomiting) and attitude (we usually refer to him as the crazy beast). It seems that the more severe his physical reactions, the worse the nodules are on his feet. He did previously have nodules on his hand and elbow but the one on his elbow disappeared and the one on his hand was biopsied.

I am just curious about the rare auto immune response, I hadn't really heard of anything that was temporary with arthritis in kids. Finn's docs have told us that they hope that he grows out of his issues but they are not in the position to make any predictions.

I hope that your ds is feeling better soon!

[CarrieMF]

You can get Diclofenac gel(concentrated with a RX or more diluted otc) & rub it into the areas that are sore. It will help to get rid of any inflamation better(especially the concentrated version). If there is inflamation it will cause pain.

I'd also look into going to a physical therapist. They have a variety of treatments that can help with any stiffness, pains & inflamation he may have.

[philomom]

Heating pads, electric blanket, hot soak with Epsom salts.... may offer some relief. Plain old Tylenol helps my kid better than the Motrin.

[Grace and Granola]

Originally Posted by purplepaisleymama

I am just curious about the rare auto immune response, I hadn't really heard of anything that was temporary with arthritis in kids. Finn's docs have told us that they hope that he grows out of his issues but they are not in the position to make any predictions.

I hope that your ds is feeling better soon!

Hi, thanks for responding. My son has Henoch Schonlein Purpura. He had a regular upper respiratory type illness about a 10 days ago. He recovered fully from that illness, but his body continued to fight against his healthy cells. He developed a bruise-like rash on his feet and ankles and he couldn't walk all of the sudden. We waited about a day before taking him to the ER because it was all getting worse. I don't fully understand it, but from what I'm told, he will have the rash on his legs, gi problems and arthritis in his ankles for about 4-6 weeks. There is a chance it could re-occur, but we're hoping it won't!

Here's a link if you're interested: http://kidney.niddk.nih.gov/kudiseas.../HSP/index.htm

Today was his first good day. After researching here on MDC, I decided to get the homeopathic cream, Traumeel, and I put it on this morning and once in the afternoon, and he did well. He walked a bit funny, kind of stiff, but he did not complain of pain.

I also just found out that my husband had this same disorder when he was young, but without the arthritis. He just had the rash. Interesting since all the research I've done says it's not hereditary.

[purplepaisleymama]

Originally Posted by Heatherb917

Hi, thanks for responding. My son has Henoch Schonlein Purpura. He had a regular upper respiratory type illness about a 10 days ago. He recovered fully from that illness, but his body continued to fight against his healthy cells. He developed a bruise-like rash on his feet and ankles and he couldn't walk all of the sudden. We waited about a day before taking him to the ER because it was all getting worse. I don't fully understand it, but from what I'm told, he will have the rash on his legs, gi problems and arthritis in his ankles for about 4-6 weeks. There is a chance it could re-occur, but we're hoping it won't!

Here's a link if you're interested: http://kidney.niddk.nih.gov/kudiseas.../HSP/index.htm

Today was his first good day. After researching here on MDC, I decided to get the homeopathic cream, Traumeel, and I put it on this morning and once in the afternoon, and he did well. He walked a bit funny, kind of stiff, but he did not complain of pain.

I also just found out that my husband had this same disorder when he was young, but without the arthritis. He just had the rash. Interesting since all the research I've done says it's not hereditary.

I am happy to hear that today was a good day!
Last winter we were going day by day and I was so happy when he would walk at all, so we are so lucky this winter, though Finn has been wearing a mask for the past 2 months every time we leave the house or someone not in our family is here. We are hoping that if we can avoid the sickies for the rest of the winter he might do better, he has an almost non-existent immune system and after what we went through last year I am not relishing the possibility of a hospital visit.

I had not heard much about Henoch-Schonlein purpura, it was mentioned in a few places but I had not come across the reference to bug bites, very interesting; Finn's issues almost all came to a head after a bunch of tick and other bug bites when we were camping. He didn't really get any bruises, he was covered in sores that opened and were reddish/purple/blue and were itchy (at least he was scratching them all, the docs originally said that he wasn't itchy).... he had between 30 and 200 of them at any given time for months.

I hope that your ds has a quick recovery, I totally agree with the traumeel, it has worked here too! We also use arnica, usually the boiron brand. He was helped a bit by it, at least it made him more comfortable. I know that Finn was on Motrin and Tylenol for a time, we would have to alternate to get more coverage for pain control. After awhile we decided that amitriptyline would be better because he had better pain coverage with a smaller dose, he was on Motrin in the morning (to make sure that he wasn't tired all day) and amitriptyline at night to help him not be in as much pain and get more restful sleep. He was in a better mood while on this schedule, it seemed to help him get the healing sleep that his body needed. We ended up figuring out a bunch of his allergy triggers around this time too, it seemed to help him when we eliminated them and we could decrease his meds.

I know that in Finn's case he ended up not wearing shoes for the entire winter, one of our good friends makes shoes for babies and kids and she made custom leather slipper/shoes and they were perfect for him... we would layer warm, wool socks on his feet, usually he opted to wear knee socks and other cushy socks on top. Then when he was up and around he would wear his kaboogie shoes and that helped keep the pressure off of his joints while walking. When we went to his neurologist (awesome guy) he suggested that we make sure that Finn always had the most comfortable shoes possible so that he would not have any more joint issues and so he would not equate walking with pain (more than he already had

We are in need of a larger pair now so he is going to pick them out and she will make them up.... the last pair he picked out and paid for with his own money!! I thought that the green (picture Robin Hood green) with fringe and skulls appliqued on the toes were awesome and everyone loved them. Though Finn now has peripheral neuropathy and does not go out without shoes ever he is quite a shoe person, he loves to have cool shoes

Best wishes for your little guy (hugs)
~laura

[Grace and Granola]

Oh Laura, I really feel for you. You have been enduring this for so much longer than I have. And this is just so hard to watch ds go through. How old is your son? It's interesting what you said about the tick bites. Did the doctors say it was related to that?

Today ds woke up feeling good. His ankle joints look huge and nobby, but he says they don't hurt. I guess that's the important thing. It's just good to see him smiling again.

[kjbrown92]

If most of the pain is from inflammation, Pure Encapsulations A.I. Formula is very good (and free of most allergens). I don't know what the dosage is for a child. It comes highly recommended by my osteo. I have a compressed nerve and as long as I stay on the anti-inflammatories I don't get UTIs. As soon as I go off, I get another one. And it's doing a better job than Motrin was (and I was taking the 800mg at a dose kind) and kinder on my stomach.

[purplepaisleymama]

Originally Posted by Heatherb917

Oh Laura, I really feel for you. You have been enduring this for so much longer than I have. And this is just so hard to watch ds go through. How old is your son? It's interesting what you said about the tick bites. Did the doctors say it was related to that?

Today ds woke up feeling good. His ankle joints look huge and nobby, but he says they don't hurt. I guess that's the important thing. It's just good to see him smiling again.

Thanks for the kind words heather.... it seems that for Finn just when one thing is getting better another thing gets worse. I know that he is much happier this year, he is not very happy about the mask but he is feeling great in comparison to last winter. His foot is not looking great, he has nodules where his big toe meets his foot, it usually looks as if there are pea sized pebbles under the skin. He says that they don't always hurt but he is usually very sensitive (careful) about how he moves his foot, if he is sleeping he reacts immediately to any touch or pressure to the area. The doctors are not sure whether the tick bites have any connection to Finn's issues, some docs have mentioned that they may be connected, though usually they are not as interested in discussing what caused his issues, they would rather talk about how we can medicate them I know that we have been very pleased with our current docs, though it took years, literally to find them all....we are all on the same page now, they respect me and really listen to what I say. I know that if I call and tell them that I am concerned about something they will usually give some advice but ultimately leave it up to my discretion.

I am so very happy to hear that your ds is feeling better, it is so heartening to see them getting back to themselves!! Do your ds' ankles have any small nodules or are they swollen in general? I am just wondering how they are swollen (sorry for being nosy, it seems to be a by-product of our medical sagas, I am always thinking of connections and comparing. I am always surprised when the things all seem to end up connected and somehow they are the simplest connections..... the doc that we are now seeing are all people who are open to thinking outside the box, it was the make or break it for us, if they aren't comfortable with listening to my dh and I and taking what we day into account we find new people

I hope that your ds continues to improve and that this is a one time only thing for him. Just so you know, if you need to chat sometime about what you are going through feel free to email me, I know how hard it can be to find similar situations and sometimes for me it helps to get it out

Take Care,
Laura

[Grace and Granola]

Originally Posted by purplepaisleymama

I am so very happy to hear that your ds is feeling better, it is so heartening to see them getting back to themselves!! Do your ds' ankles have any small nodules or are they swollen in general? I am just wondering how they are swollen (sorry for being nosy, it seems to be a by-product of our medical sagas, I am always thinking of connections and comparing. I am always surprised when the things all seem to end up connected and somehow they are the simplest connections.....

I don't mind your questions at all, I am the same way...wanting to know all I can from anyone who might have a shred of insight!

Ds's ankles and feet were swollen at the beginning of all this. But now it seems like the ankle bones on each side of the foot are bigger than normal. Not puffy swollen, but bigger and just stick out more. Yesterday, there was an extra bump about an inch away from the inside ankle bone. Today, that was gone. He seemed great for the most part today. We didn't use the Traumeel or anything. I hesitate to rejoice, because I don't know if this is the end of a short bout or if it's going to be an up and down situation that we need to take day to day.

If you don't mind me asking, how old was your son when he got the tick bite and how old is he now?

[purplepaisleymama]

Hi Heather,

Finn was ~10 months old when he had the swollen ankle with the bites and he is 4 1/2 now.. He is small for his age now, though they are pretty sure that this is a combination of the JRA and genetics. ( I am 5'3" and I was tiny when I was his age, though the rest of our kids have taken after Dad, they are all tall for their ages, my dh is 6'3"

Finn was 10 months old when we were camping and he was bitten by many bugs ( we were in a pretty woodsy area, everyone who camped had bites but he was the only one to react so strongly), his leg swelled quite a bit. I noticed on the Sunday of our camping trip that his leg was swollen, one of our good friends' dd was helping us out with getting the kids ready to leave and she couldn't get his sandal on, she showed me and we realized that he must have been bitten by something. His ankle, part of his foot and up his leg towards his knee was swollen, it resembled a sausage. He was cranky and I called the pediatrician, he told me to give Finn benadryl and keep an eye on the leg. I gave Finn meds for two days, it did help but I can say that it took awhile for the swelling to go down. He was covered by what we thought were bug bites, the doc was sure that he had gotten many mosquito bites and rx'd more benadryl and calamine. After a month or so and three doc visits with no improvement (despite the ped suggesting that Finn had anything from scabies to chickenpox)we ended up going to a dermatologist, they diagnosed him with a form of warts and gave a bunch of rx, we tried everything including homeopathy and nothing improved any of his symptoms. We ended up at a new dermatologist and she diagnosed him with pityriasis lichenoides chronica (which turns out to be a latin phrasing of 'itchy rash hat comes and goes', which happens to be what I wrote on the intake form, he was given more prescriptions that didn't work.

We struggled with Finn being covered with between 30 and 200 spots over his body for almost a year when he developed nodules on his heel, hand and elbow. We brought him to Boston Children's Hospital to see a Rheumatologist, as we had already been to 4 other specialists who had all suggested that it could be rheumatological . He was diagnosed with JRA and we have had him on and off of meds ( pain and antihistamine ) since that time. We are aware that most children will end up on steroids and other meds for JRA but we have avoided them so far, the docs are hoping that if we wait until we have to use them we will be able to keep him more active (all of the meds contain his allergens so we also have to weigh the damage of giving him allergens that will make other issues worse for him).

I can remember when we began this whole journey and how scary it was to be alone, we did have some wonderfully supportive friends who supported us, it just seemed that noone could really feel what we were going through. I was told by one of the Doctors that we brought Finn to that I must be suffering from Munchausen's because I just wanted something to be wrong with my son. I am actually getting used to having to prove myself to the medical professionals, it is just easier now because most of the ones we see now trust me.

Finn's foot is not as bad as last year but we are getting concerned as the nodules are getting larger. He is not complaining of pain right now but with Finn that doesn't always mean that there isn't any, with the neuropathy we have to be vigilant as he has had 2nd to 3rd degree burns on his foot and he didn't feel the pain until an hour later. He is unable to feel all sensations on his extremeties so we watch and try to make sure that he isn't missing anything.. It certainly keeps us on our toes!

I hope that today was better for you all, it always helped me to be able to look back at the end of the day and realize that he hadn't been in pain(as opposed to the nights when I just cried).

I will try to dig up any pictures that I have from when Finn's leg swelled, I can't remember if we had any really close up ones though.... I know that we have a bunch of his rash but I forgot to take ones of the ankle.
~laura