Foot Problems

[Guest guest]

Barb

s foot doctor didnt do the cast but did the AFO this is a brace that can be taken off and let the joint still move when needed if the cast is that bothersome then call the doctor and tell him that arthritic joints have to be moved even for a short time if not you can get a contracture or something like that not sure of the spelling right now this is where the muscle will tighten and start to get smaller this is what happened to melissas leg and ended up bent until they did a serial casting to straighten her leg out theres also a shoe that can be woren that would help call a prosthetic place around you and ask about this we went to the foot doctor and she wrote a prescrib and the prosthetic doctor did the rest there also is a air cast that would be better than a regular cast with JRA you also have to take into thought the muscles and tendons and ligaments are involved with this to

Robbin

[Guest guest]

Robbin,

I agree with you, any of those suggestions would have been better than a

permanant cast. It really took me off guard when he said he would cast it.

It's funny that you mentioned about the ligaments and tendons. The dr. also

said that Chase's achilles tendon is very tight and he can't extend his foot

towards his body. I did put in a call to the ped. rheumy to get his thought

on all of this because I was thinking exactly what you said about these kids

having to move their joints. So waiting to hear from him.

Thank you so much for your ideas. It's nice to have some ammo if I have to go

in there fighting. Hope 's doing well...from all your post's, she

sounds like a beautiful girl...inside and out!!

Take care,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

lolol shes is shes like a timex lolol tendons and all were tight the PT even said a cast on her for longer than 3 days could cause more problems so she did take it off within 3 days this is the reason its called serial casting so they can take it off and do therapy then recast it dont let that cast stay on long or something else could happen has different braces for times when she needs them it helps a person without JRA could handle the cast for long times but when it comes off they still have to have PT my brother hurt his foot yesterday tore muscle and a tendon and ligament they didnt put him in a cast they used ace bandage and a removeable splint and gave him crutches lololol he didnt like the crutches so he layed those down and the splint was bothersome so he took that off i told him if you take it off then you have to sit and elevate it lololol said think about this when i hurt its not fun having things on you to make you stop doing what you like she said arthritis does it to you and she dont have to use the splints lololol she said that the crutches make her asthma act up and she gets winded so its sit down time for her til things get better he said well i cant handle this not moving around lololol He injured his foot by stepping the wrong way on a step my brother is 22 years old and really didnt see what inmobility was until they put him on the crutches and splint on always a active kid lololol well got to get to cleaning

Robbin

[Guest guest]

Dear Barb,

Was just reading your post to Georgina and was wondering if they

mentioned anything about reovable casts? When Kate was dx. she already

had contractures of the knees and ankles and her therapist made her

removable casts for her legs (regular plaster casts cut down the sides

with velcro on them) She only had to wear them to sleep in--and that

plus therapy really helped her alot. (she gets a new pair about every 6

months--that's due now to some hip problems) Anyway. at least she could

still be a kid during the day and do some of the things she liked. I

know this may not be the solution for you but I was just wondering if it

was a possible option? Good Luck!

and Kate--7 severe poly and AVN

[Guest guest]

Hi ,

No they didn't mention anything about removable casts, but that makes so much

more sense to me. Didn't even know there was such a thing. Chase could at

least take it off to sleep and take a shower, but leave it on when he's

walking so he stays off his foot. I also was thinking some kind of therapy

might help, but that wasn't mentioned either. Thanks for the idea. I know

Chase would be much happier with that because he's so sad right now.

Sincerely,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

warm water soaks help ALOT put some epson salts in it call the one who put the cast on and explain to him theres other ways of dealing with this then to restrain the joint and since its the heel

part thats a problem the tendons need therapy besides the warm bath soaks for the foot you can do easy excersises think a few of s were just takeing the foot and easily moving it from side to side and pushing down and pulling up so many times a day no pressure on the foot at all though massage is another thing to just sitting together watching TV have your child sit next to you with feet in your lap and massage them works good moving the toes back and forth is good you can do it then let your child do it i cant understand why a doctor would confine a JRA childs joint unless its broke removable casts or splints are recommended for these kids as long as theres no broken bones or a joint replacement seems odd to me hope hes feeling better Robbin

[Guest guest]

Hi Barb - I would proceed with caution regarding the cast thing. Ian's only symptom for the first 10 months was achilles tendonitis and ALL the doctors we saw agreed that only if the cause of pain was Sever's Disease (calcaneal Aposhysitis ), would they possibly put a cast on him (they all agreed it was NOT Sever's). By squeezing different areas on the heel, the doctor is able to pinpoint where the pain is located. Ian's pain is where the achilles tendon inserts into the bone (which is called enthesits, which is frequently found in Spondo). Did the podiatrist say it is Sever's Disease? We had PT in combination with Vioxx, which did help him. Also, we were told injection could cause damage to the tendon and not something they like to do. Unfortunately, Ian's achilles tendon is still a problem and from what we have read, can be one of the most bothersome symptoms for the child as it is hard to treat. Ian does several stretches each day to help his achilles tendon stay loose. We, too, have a appointment with a podiatrist this month thinking orthotics would help Ian. Now I'm really curious to see what he has to say . . . Foot problems Hi Georgina,I took Chase to the podiatrist yesterday with the hopes that he would just suggest some kind of inserts for his shoes. He took xray's of his feet and examined them. Every time he pressed on Chase's right heel, he would wince in pain. He decided that Chase should not run and try to rest that foot and the only way to do that is to put a cast on it. He said he would try it for 3 weeks to see if that would give him some relief, but no more than that because with jra you need to be able to move your joints. Needless to say this kid is horrified. He's really having a hard time with the crutches and even more upset that he can't go to his swim classes. I'm trying to make the best of this situation and trying to see the positive in this. I'm not so sure this was the right decision. He also suggested cortisone injection if this doesn't help.Now I can understand why Josh put off going to the foot dr. Just thought I'd let you know how we made out.Barb, mom to Chase, 9 w/systemic

[Guest guest]

Hi Robbin,

Thanks for the good ideas. Although massaging the foot may be tuff. He

giggles just when I cut his toe nails....very tickelish feet. Foot massages

sound like heaven to me though.

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Dear Barb

I hope Chase won't need the cast but if so I hope they can give him a

removeable one. I know Kate wasn't thrlled at first with those either

(she was 3) but after she figured out she could take them off--did

better. She's had assorted colors from hot pink, red, blue, green etc..

to a pair with a teddy bear print! When she was 5 she actually picked

out a camouflage print! lol! I don't know if all hospitals carry the

different colors or it's just our children's hospital--but if he does

get one you might ask them. I know her therapy has been a great help in

managing her disease. We even do some at home. It's all a lot of work

but as a mother you do what it takes! Good Luck and let us know how

things go.

Laua and Kate--7--severe poly and AVN

[Guest guest]

Hi Jon,

No the podiatrist didn't mention anything about Sever's Disease.....I've

never even heard of this. I'm curious to hear about Ian's appointment with a

podiatrist. I would also like if Chase could get some PT. Stretching

exercises that he could do at home also sound like a good idea to me. When he

was first diagnosed we were sent for PT and OT, but after examining him the

therapist didn't feel he needed it and told us to come back only if he got

worse. And that was like my 4th attempt at trying to find a therapist that

did PT and OT. How frustrating.

Hope Ian has better results.

Sincerely,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Hi ,

Chase did get a cast and unfortunately it isn't removable AND it isn't blue

like he wanted. So I've given him a blue permanent marker for his friends to

sign so it will kind of look blue. Wow...that's so nice for where she

goes. Sounds like this hospital knows how to make the best of a situation for

kids. Camouflage print..that's so funny, but the teddy bears sound great.

Thanks for asking and hope Kate's having good days,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

lolol get some loion and warm it up and use that on his feet maybe the lotion will help with the tickles lolol

loves to use warm lotion Robbin

[Guest guest]

Hi Barb,

Maybe you could call the Podiatrist and ask if there is another, removable

option to allow him to remove it for swimming - if you could assure him that

Chase would keep it on the rest of the time. Just a thought - I have removable

splints for my wrists that I have used from time to time.

Val

Rob's Mom (4,systemic)

In a message dated Fri, 3 May 2002  7:32:07 PM Eastern Daylight Time,

owits@... writes:

>Hi Georgina,

>

>I took Chase to the podiatrist yesterday with the hopes that he would just

>suggest some kind of inserts for his shoes. He took xray's of his feet and

>examined them.  Every time he pressed on Chase's right heel, he would wince

>in pain. He decided that Chase should not run and try to rest that foot and

>the only way to do that is to put a cast on it. He said he would try it for 3

>weeks to see if that would give him some relief, but no more than that

>because with jra you need to be able to move your joints. Needless to say

>this kid is horrified. He's really having a hard time with the crutches and

>even more upset that he can't go to his swim classes. I'm trying to make the

>best of this situation and trying to see the positive in this. I'm not so

>sure this was the right decision. He also suggested cortisone injection if

>this doesn't help.

>

>Now I can understand why Josh put off going to the foot dr. Just thought I'd

>let you know how we made out.

>

>Barb, mom to Chase, 9 w/systemic

>

>

>

>

>

[Guest guest]

Hi,Barb. Your son's symptoms sound simimlar to my Chris' and we have been

told they are because of his spondyloarthropy. Pain in his heel, achiles

tendon problems, lots that you mentioned sound a lot like my son. Early in

his treatment, before diagnosis, orthopaedists put him in various braces.

All they did was aggravate the problem. The rhuemy we finally saw took him

out of all braces as soon as she saw him. She sent him for physical therapy

which helped immensely. I would really hesitate to cast something like this.

He should be able to move his tendons and joints. I would really talk to the

rhuemy on this. Just wanted to give you an alternative idea on this one,

Michele

Foot problems

Hi Georgina,

I took Chase to the podiatrist yesterday with the hopes that he would just

suggest some kind of inserts for his shoes. He took xray's of his feet and

examined them. Every time he pressed on Chase's right heel, he would wince

in pain. He decided that Chase should not run and try to rest that foot and

the only way to do that is to put a cast on it. He said he would try it for

3

weeks to see if that would give him some relief, but no more than that

because with jra you need to be able to move your joints. Needless to say

this kid is horrified. He's really having a hard time with the crutches and

even more upset that he can't go to his swim classes. I'm trying to make the

best of this situation and trying to see the positive in this. I'm not so

sure this was the right decision. He also suggested cortisone injection if

this doesn't help.

Now I can understand why Josh put off going to the foot dr. Just thought I'd

let you know how we made out.

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Hi Val,

Good idea and I wish I'd have thought to ask that at the time. Still waiting

for our ped. rheumy to get back to me. He must be very busy...he usually gets

right back. Just want to check with him to get his opion before I call the

podiatrist.

Thanks,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Hi Michele,

Wow, it's amazing how many kids have foot problems. Do you think this is jra

related? I just thought it was from Chase always walking on his toes. He

never complained about his feet hurting until after he was diagnosed though.

The podiatrist didn't think it was jra related. Still waiting for our rheumy

to call back. The more I hear, I think therapy sounds the most helpful.

Thanks,

Barb, mom to Chase, 9/w systemic

[Guest guest]

Barb and Group

if you think about it kids are learning about life and kids will think its kinda normal foot pain they sometimes over hear parents grand parents say their feet hurt the kid will see maybe its normal for this until this pain gets really bad or it can be seen with swelling or we touch the spot then the child will tell you sometimes when theres things going on that kids dont want to mention it look at us we get up with maybe a headache or back ache we dont say anything we just take asprin and keep on going thinking or knowing it will go away until the pain gets bad we dont say anything kids could be the same way i didnt notice just how s back was until one night i was washing her back and she said DONT touch that part well i looked and didnt see any bruises and asked did she fall she said no then asked how long has it been hurting or causeing problems her answer was its been bothering me along time but as long as no one touches it i am ok remember these kids have pain and know they just dont understand why and in their little heads they think its normal

remember how you were as a kid

we have to look for signs and tippy toeing is one favoring one arm or leg for another or limping heres a example when a kid HAS to go pee what do they do especially when they KNOW they need to go pee but dont want to leave playing for a minute well boys will hold theirself and girls will cross their legs lolol accidents will happen lololol i have gotten to where i will come out and ask hows your leg arm back knee elbow fingers i will go down the list of things lolol

Robbin

[Guest guest]

Personally, Barb, I do think it is jra related just by my experience with my

son. Of course, I'm no dr but I do know what my son went through and still

goes through with his feet, ankle, heel, toe, and achilles tendon pain. He

is doing well now - the MTX has helped him be more comfortable to do more

exercise which helps. started with ankle pain and gradually everything

else has begun. He was on 800 mgs a day of Celebrex - an anti-inflammatory

and even that wasn't enough for the pain and inflammation. That is when the

rhuemy added the disease modifying drugs and through trial and error we have

ended up with the methotrexate. has finally been able to reduce the

Celebrex to 400 or 600 mgs a day. A great improvement. He did have the

spondy I mentioned added to his diagnosis and some of what you originally

wrote about reminds me so much of that. I would suggest you look into it and

see if you don't draw a similar conclusion. I had never even heard of the

disease until was diagnosed. I then went to the arthritis website to

check it out. I feel that every bit you can learn will help you understand

what the drs are talking about. Good luck, Michele

Re: Foot problems

Hi Michele,

Wow, it's amazing how many kids have foot problems. Do you think this is jra

related? I just thought it was from Chase always walking on his toes. He

never complained about his feet hurting until after he was diagnosed though.

The podiatrist didn't think it was jra related. Still waiting for our rheumy

to call back. The more I hear, I think therapy sounds the most helpful.

Thanks,

Barb, mom to Chase, 9/w systemic

[Guest guest]

Hi Michele,

I absolutely agree with you about learning as much as you can about this

disease. For 3 months before Chase was diagnosed with jra, they kept saying

it was lyme disease. The more I dug and researched I felt pretty confident

that it was systemic jra before it was confirmed. I also credit methatrexate

for Chase doing so well. My husband was very against this drug at first, but

I think he feels differently now that he has seen how much it helps. I don't

like these drugs either, but seeing my son in that much pain was much worse.

I will do some research about spondy though.

Thank you,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

i know isnt systemic because its in every joint

i also had to do my research and still doing research on this disease little things that pop up with melissa new things and old things on one report it states AS on another it has poly JRA as i read through each report theres little words that i researched

internet is great and since we have to wait for input to go in the system as we research it takes time when i first started there wasnt much on JRA people took their time as Georgina did and started letting others know what was going on with her and this disease that she was having many many miles away from me well i was reading and researching and came across others who also were having the same as i was now here we all are reading about others all across this world dealing with JRA and many types as each day passes new symtoms popping up the newbies have alot to read and understand that they are not alone anymore

once they find this group its great to know too

feeling alone with a disease isnt fun during my life one thing sticks in my head someone stuck it there as i grew up lololol if you never ask a question you never learn and the answer will do you good

sitting back and never doing anything about a problem will never get you anywhere

Robbin

[Guest guest]

Hi Robbin,

You are so right. I count my blessings everyday for you and everyone else

here that has so much to offer. For me and everyone else that has recently

found this site, your knowledge is invaluable.

Thank you,

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

thanks When i was growing up we kids were told adults talk you listen and when adults do you watch years later i would sit and just listen to my elders learned quite a bit to lolol i use to sit and write down things for reference if ever needed elders in my days were wiser and full of wisdom as i grew up i sat and listened more and their stories were interesting myths were also old wives tales coool lolol maybe it was superstition lolol who knows but what they said helped now i listen to yall and those with more expirence than i we learn from each other i have a journal of things i have wrote put up shoot i still sew on a 1887 pump sewing machine lololol cant wait to show how to use it shes really going to fall in love with it as i did sew at her own pace and forget the electric ones lolol the old saying mom knows best i have also thought about going to a retirement home and just talking with elders about arthritis and what were the old remedies they have used my grandpa use to buy this stuff that smelled real bad but sometimes it worked lolol

i have been to etowah mounds and to cherokee just for their theory and mixtures of medicines and will try anything that says relieves pain of joints as long as i have a feeling to try it you know the mothers gut feeling lololol heres something that will help at least really likes it lolol go to Kmart look for BATHERAPY its $5.00 here for a jar this 1 jar really works not only does it help some it also helps with sleeping LAVENDAR makes it and its got a great Lavendar smell to it lolol my sister also uses Lavendar johnson and johnson to help with her 82 year old hubby it helps him calm down and sleep lololol well got to go Robbin

[Guest guest]

Hi Robbin,

I've found that some of the " old " remedies that seemed to work for us when we

were small are no longer available in stores. What a shame, I swore by some

of them. I'll have to search for the next local Kmart. Unfortunately ours is

closing June 12 and as they say " pickins are slim " . Thanks for the tip.

Barb, mom to Chase, 9 w/systemic

[Guest guest]

Barb

lolol we have one closing close by but left the one thats really bad open lolol

should have left the one closing open and shut the other one lolol less dangerous maybe they will put a Walmart there i hope NOW theres what we dont have close by i have to travel to another town just to get one lolol the product may be able to get if you knew the company name not sure if you remember something the elders would give babies when they were teething i cant find it no where now it was called MOFFETS TEETHIN POWDER maybe it was MOFFINS lolol my mother in law had that accent lolol but that was used on both my kids once in the morning and once at night never had any teething problems it smelled like cinnamon lolol wish they would bring back the old stuff havent you noticed when something REALLY works they take it off the market or make it so difficult to get Robbin

[Guest guest]

Hi Robbin,

We have a Walmart right up the road. I use their pharmacy for all of Chase's

prescriptions. I'm so grateful for it. I can't tell you how many times we had

to make a diaper run in the wee hours of the morning and so glad for them

being open 24 hrs. You're so right, I can't tell you how many times I've

found a product I liked and they took it off the market.

Barb, mom to Chase, 9 w/systemic