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momtoty
May 13th, 2004, 02:25 AM
I have a new one for you all;

Last weekend Jim took the two little ones ( Ty and Caroline)up to his parents house so that I could finish some painting around the house (I don't like Ty around the fumes with his asthma) While there, Ty burned his arm and hand on what looks like a curling iron! and the worst part is they didn't even know it had happened :? ! They are good grandparents (Jim was out golfing) and have stayed with the kids before but Ty is a little quicker now and they are a little slower I guess. Anyways, I know them well enough to believe that Ty was not out of their sight for very long- just as long it takes to catch up with him. They said that he never fussed, cried, didn't utter a peep about it, so when Jim was changing Ty for bed later that night he noticed the burn for the first time( poor Ty no one ever put it under cool running water, or a cool cloth nothing!!). No one knew how it had happened. :whatthe?: This was a nasty burn! I took him to the doc when he got home and he felt it was second degree. We could touch it, hold his hand, it was like it never happened. The only reason he knows it's there is because it started to blister and ooze so I had to put some medicine on it and cover it with some bandage. This really worries me, why didn't he feel this??? I thought he knew what hot was- he knows the babysign for hot. So now after thinking about it for a while- he only uses the "hot" sign if I have a coffee cup and tell him "its hot" or if I am trying to feed him something and I think it is too hot- I will say "hot" and he will do the baby sign. I now think he really does not know the sensation of hot. Sometimes when I put him in the tub and Caroline gets in after him she is like" ohhh its hot mommy" meanwhile Ty is sitting in there happy as a clam. He eats steaming hot frenchfries- you know how impatient a toddler can be when you go through the drive through- I have Ty's older brothers break a few in half and try to blow on them so they cool down, but Ty will just scream until you give him the french fries- I figured they must have had a chance to cool down- because Ty is happily eating them- but my 16 year old can not eat those same french fries as they are too hot. Is this common?? MPS trait??? nerve ending issue??? any one deal with this type of problem before???

Thanks for any input you may have.

:group
Kim

Barbara Pryor
May 13th, 2004, 08:01 AM
Kim,
I know that when Andrew's father was watching him he opened the stove to try to get up on the counter and he put his hands on the oven door and had severe burns to both hands. I am not sure if he cried or not then but in the days after it didn't seem to bother him like I think it would bother me. Andrew has mild carpal tunnel and I know that it causes your fingers to go numb but I wonder if it makes the whole hand numb.
Shawn has to have his bathwater run for him because he is the same way as Ty. He wants the water to be hot, at least to me and I think that if I ran it as hot as he wants it then it would melt the skin off of his body. They say it is due to being on dialysis for so long it messes up your circulation. Today it is going to be 80 degrees and he wore jeans and a long sleeve shirt to school.
It must be something in the nerves because MPS is a degenerative neurological disease.
I hope that Ty's burn gets better soon. I know that Andrew's looked horrible.

May 13th, 2004, 08:20 AM
Dear Kim.
Poor little Ty. This is so awful. I can only relate to you what my doctors have told me regarding pain. These little guys with MPS have a high tolerence to pain as it is thought they live with it on a daily basis. I could tell you many sotries that would blow your mind regarding times whe nthings have happended to my son Chase and we were blown away. He has also burned himself and showed little or no evidence that he was in pain.This is when he was younger and like you said , he was so fast, he had to be followed 24 hrs a day. Also note this . whe nChase was 2 he would cry that he needed bandaides at night for his hands. We would question the doctor and he knew of no reason for this. I bought bandaides say, 4 boxes a week . Each night it would start. By the time he was 4 I was telling the drs he had carpal tunnel. He had not been diagnosed until 3 and a half so the effects of MPS were not known to us at 2 and 3 yrs of age. They said I was nuts! Long story short and many drs later, he had surgery at 5 yrs old and it was the worst case or carpal tunnel they ever saw in their lives, so they said. They said he had to been in terrible pain and don't know how he could have even smiled at all during this time. After the surgery, he showed no signs of pain from the surgery. I was instructed to give him codeine, he was laughing and running and I did not. They said he had a high tolerence to pain from suffering with it for so long.

Prior to the surgery I remember several things happening to him that floored us all. He too picked up my daughters curling iron, and did the same as Ty. He never cried. He grabbed the car window as I was pushing the button to put it up not knowing his hand would be on it and IT CLOSED ON HIS FINGERS! I was cying hysterically, not him. This is the topper, one day my husband was cutting the grass. Chase was never allowed out while my husband was doing this, We locked all the doors. Low and behold, I remember making cookies in the kitchen and my husband carried Chase through the door. My husband was crying. Chase was bleeding from his mouth. I screamed!!! My husband begand to yell at me, Chase had opened the door gone out and while the ride around lawn mower was on, (therefore Tony did not hear Chase) my husband picked up the bench to a picnic table to move it. As he swung the bench around he hit Chase in the mouth!!!!!!! KNocking 2 front teeth out!! My husband was yelling nad crying I was yelling and crying my other kids were crying. We were all good for nothing basket cases..However........Chase did not shed a tear. We all drove to the hospital beside ourselves and Chase never cried, instead he said "No cry mommy"Tring to comfort me.
So I could write a book on the many horrendous things tht have happened t omy son but the main point being he has a high tolerence to pain. My dr says when he does cry from pain we all need to know it is serious and excruciating pain. Ands he needs to be seen anytime he cries.

Sorry to always be so long. I just have so much to tell somedays. These storys so pain me even years later. Hugs to little Ty. :kiss:
love Rosemarie

THEmps2mom
May 13th, 2004, 08:36 AM
I haven't dealt with many pain issues in relation to burns with Kraig. But as it has already been said, many other things have happened to Kraig that would tear someone else up in pain, but not him.

The biggest was four years ago, Kraig fell while jumping in a moon walk (a large inflatable blow up thing you jump in), long story short, he fractured his left femur *OUCH* My brother is a paramedic and was right there, we had rented this thing for my daughters birthday. Kraig's leg swelled up almost instantly, he did cry a little, but not screaming in pain. We had to call the ambulance and the whole nine yards. We got to the hospital ER and eventually had a portable x-ray, the doctor came back in shaking his head, he couldn't believe this child had a spiral femur fracture and wasn't freaking out in pain. Don't get me wrong, he shed a few tears, had to endure 2 days of traction, a week in the hospital and 2 surgeries for this. But from what my brother has said (he's seen many adults with femur fractures) Kraig should have been screaming in pain.

Kraig has had a bi-lateral tendon relase for carpal tunnel 5 years ago. Prior to that surgery I know his hands were very numb making it difficult for him to feel much of anything in his hands.

(((HUGS))) to mom and Ty. I'm sorry he got such a severe burn, I hope it heals quickly.

zachiesmom
May 13th, 2004, 03:10 PM
:( So sad for Ty, but as everyone has said, he probably really doesn't know it is hurting. ML children have severe cases of Carpel Tunnel as well and I've heard many stories of the same kinds of events. Zach has not really had that kind of thing happen but as I posted a few days ago, he recently fell flat on his face at a museum, concrete no less, ughhhhhhhhh...anyway, he had a lime (actual size) on his forehead for two weeks, never cried!! I was so afraid he wouldn't wake up if I put him to bed!! He's never once cried for an ear infection or a fever or even when he gets a shot! And I know he can, BELIEVe ME!!! He can really cry when he doesn't get his way!!!!!!!!! :8): I know that we are about to have a nerve conduction study on Zach for the carpel tunnel, maybe you should ask your orthopedic about one. Good Luck and don't feel too bad :frown: It's a small blessing that they can cope with the pain for all the stuff they have to go through.! :angel: I think it hurts us more. So here's a hug for you! :group

Love, Brenda

Sheila George
May 13th, 2004, 06:08 PM
Shelby also seems to have a very high tolerance for pain. I have always associated it with her nerve endings but have never really known the true reason. However, I can say she will react to hot food and hot water, but as has been stated before every child is different.

I hope the sore heals soon. Poor Ty, even though he did not react it may have hurt, we just don't know.

momtoty
May 13th, 2004, 06:56 PM
Thanks everyone, :cry: :cry: I am so sad for all the accidents and mishaps, maybe it is a small blessing that our kids do not feel the pain as much as other people. :angel:
Brenda,
Thanks for the advice, it just so happens that Dr Kurtzberg has ordered a nerve conduction study for Ty, and he will have it during the week we are there, in NC. I had no idea what this was and why Ty would need such a test when Jayne first sent me the schedule of all Ty's appointments. In fact I was going to ask her if it was really necessary??? I'm glad I hadn't gotten around to that yet, now I think its a very good idea. I am still wondering, however, why Dr K ordered it- we hadn't talked much about Ty's pain tollerance or the whole heat thing. Is this a test that is done regularly on MPS kids? or on CBT evaluations??? just wondering?? :?
WE are going to NC in a little over a week, I am getting a little anxiety over the whole thing. I booked our hotel- and there are like two billion "suite" style hotels in the Durham area. I hope I chose the right one??? its a homewood suites,but there were three of those! The one I booked is:
Homewood Suites by HiltonŽ Durham-Chapel Hill / I-40
3600 Mt. Moriah Road

Melanie, do you know if this is the right one, or atleast if it is close to Duke???Jayne sent me a package with all the medical stuff but no lodging info, so I had to sortof wing-it. I probably still have time to change it if I need to.

Thanks again for all your responses! Ty's burn is no longer oozing, most of the dead skin has fallen off and it is now very pink- I think it's healing??
:group
Kim

ChrisMPS2
May 13th, 2004, 07:34 PM
I'm sorry about that awful burn and all of the other ouchies! William's worst burn happened when he was beating the lamp shade and the whole thing fell over his head and burned his cheek. We thought his sweet little face would have a big scar but it healed nicely. We had to scrub the edges of the burn roughly every day when we cleaned the wound so the skin would grow back smoothly. It was such a heartbreaking task but it really did work out for the best. There is no sign of a scar and the wound didn't get infected.

We also noticed that when we accidently step on his foot he will moan about twenty seconds later or not at all. Most kids would pull back instantly and have a few choice words about getting stepped on!

Chris

aaronsmom1027
May 13th, 2004, 07:44 PM
Aaron knows the difference between hot and cold foods. However, he loves for his bath to be HOT!!!! Sometimes I can't believe how hot he likes it. He also knows that coffee is HOT. When I was talking with his orthopedic Dr. about 2 months ago he made mention of how MPS children have higher pain tolerances than most other children. I guess that's a good thing with all they have to go through.

HickmanX8
May 13th, 2004, 08:01 PM
I have three boys with Sanfilippo, and they all seem to have a high tolerance to pain. Several different incidences that we have experienced in regards to this. Once, Grant burned his hand on an iron in the hotel room while we were getting ready for a wedding, and we never realized it until later that night when there was a perfect iron print on his hand. We have noticed this with all of the boys. Cannot tell why this is so, but it is. I hope his little burn is feeling better. Sometimes, it might be a blessing that they dont feel all the pain, because if your lil' guy is like mine, he's constantly hurting himself somehow. Take care. God Bless!

May 13th, 2004, 08:02 PM
Diddo to almost everything everyone has said so far.....except for the hot bath part Seth likes his baths almost cold, I wonder if it feels good on his joints and stuff. We have had burns and things but the one thing that pops into my mind was 2 summers ago Seth was outside playing and I was sitting on the porch watching him and I noticed that he was standing still (not common for him) and was looking at his hand after a few seconds I thought "what in the world is that child doing" so I walked over and noticed there was a wasp on his hand stinging the crap out of him but he was just watching, not crying just looking at it. I knew at that second Seth was stronger than me cause I would have freaked out and probably cried like a baby. I swung at the wasp trying to get it away and when it finally flew away Seth just looked at me like "what did you do that for" :whatthe?:
Our kids are truely amazing!!!!!
Misty
Hope Ty heals soon.

Priscilla Raftery
May 13th, 2004, 08:34 PM
When Joey was one, he used the coal stove :cry: to brace himself to try to stand!!! (There was a gate around the front and two sides, but he crawled around to the back! My dog wouldn't even get that close, the heat was so intense...of course, me,bad bad bad bad mom for leaving him alone, even for a minute in a room with a coal stove... :( ). Anyway, Joey did cry of course, these were very severe burns. However, when he had to go to the doctor's on a daily basis for four weeks so they could debreed (sp?) the skin, he never flinched or cried. They always thought we loaded him up on tylenol or something but we didn't. Joey fell down our stairs and his head left a hole in the wall!! I'm looking for the nearest phone to call 911 but he just gets up and says, "I bump my head, I bump my head" and walks away! He's had ear infections I didn't know about because he wouldn't complain of any pain. And never did he cry after any of his many falls or bumps or bruises, etc. Funny thing, this mps...Priscilla

THEmps2mom
May 13th, 2004, 09:23 PM
Kim, I've stayed at that hotel once when we are on a trip to UNC - Chapel Hill. I don't know if it's the one Melanie was referring to, but it will be fairly close to Duke for you.

As far as the nerve conduction study, I had to fight to get Kraig tested. I knew he probably had carpal tunnel, but conviencing a doctor that my 7 year old had was another story. I had our pediatrician on our side, thankfully, he's the one that pushed it and got the test done. I was right, he had severe nerve compression and the bi-lateral tendon release really helped him alot. I know carpal tunnel is common in MPS II, not sure about the other syndromes.

Sheila George
May 14th, 2004, 12:24 AM
Kim,

I believe they do the nerve conduction test as part of the CBT evaluation. If I remember correctly Shelby's came back okay, but she has always had a high tolerance for pain and it seems to me as this disorder progresses that tolerance gets higher.

(I didn't have time to read everyones' responses, so if someone already said this, sorry for repeating it.)

Laura Brodie
May 14th, 2004, 02:14 AM
Kim, Will is exactly the same as everyone elses kid! When he had his last immunisation he laughed out loud as the needle went in :frown: love Laura xxx

Vibe
May 14th, 2004, 12:18 PM
MPS2MOM: Carpal tunnel is normal for my syndrome too (MPS6), I have that now, are waiting for a letter from hospital for a surgery of my both hands. Have waiting for 6 months now. Hope I can have the surgery before the summerholiday...

Hug from Vibe.

zachiesmom
May 14th, 2004, 01:55 PM
:) kim,
I just wanted to add that it was actually a neurologist, we met at the conference that suggested we have the nerve conduction study for Carpel Tunnel as he has seen many MPS children with it, it was after that I learned it was actually very common in ML. Another thing is to make sure that they check far into the palm of the hands, most of the time they only check as far as the wrists and that usually does not show the most severe point! Another tid-bit I got from that Dr.
Good Luck next week, I'll be thinking of you both and praying that Dr. Kurtzburg helps you in one way or another. :group

Talk to agian soon, Brenda

PattyT
May 15th, 2004, 07:37 PM
HI Kim,

Jesse has Sanfilippo A and has a high pain tolerance as well. He would get toys with strings wrapped around his finger and his finger would be be purple and he'd never say a word. So now all strings or antyhing that can wrap around his finger get cut off the toys. He too likes hot baths. BUT... I will say that until he was about 5 yeras old, he hated his hair washed or his face washed.. he would scream bloody murder. My neighbors probably thought I was abusing him some how. :cop LOL! I spoke with the doctor about it, and he said that these MPS children usually have tactile indifferences. Sometimes the softest things may seem rough to them. Yet they also have a high pain tolerence for things that would normally cause most children to cry. So it just really depends on each child. Jesse is 9 years old now and loves baths and usally doesn't mind his face washed anymore. :bounce: Thank God for that.. it makes cleaning him up much easier, and now my neighbors won't hear him yelling like a crazy man, he really is an :angel: now!!

Patty and Jesse

Sharon Cochenour
May 15th, 2004, 08:33 PM
Andrew's pain tolerance is so high that I agree with Rosemarie I think MPS children live with pain on a daily basis. When he burnt his hands on the stove I was not home. He put the stove door down to climb on the counter and recieved 2nd and 3rd degree burns on his palms and knee. My husband was so hysterical that he called his mother to see what to do. She told him to run cold water. Well my husband took Patrick who was a baby upstairs and put him in his crib. He came downstairs and ran the tub full of cold water and then finally got Andrew in the tub of freezing cold water. By the time I got to the hospital I was hysterical but poor little Andrew was pretty calm about the whole thing. I of course yelled at my husband in the lobby because he could of just went to the sink and stuck his hands under cold water. He said he was so upset he couldn't even think. After about a month of debridement and dressings his hands healed up nicely.
I did have him tested for Carpel Tunnel after attending a conference and hearing Dr, Munzer talking about nerve conduction deficits in MPS children. He has a pretty moderate loss. His physical medicine doctor told me that she has experince with MPS children and finds that carpel tunnel is a common problem.
Last week Andrews teacher told me he ran into a piece of equipment on the playground. Well they were all hyserical, but he just got up and walked away like nothing happened. They tried to put ice on it but he wouldn't let them.

Sharon

Sheila George
May 15th, 2004, 08:35 PM
Patty,

Shelby still hates her hair washed or brushed and her face washed. It is good to know that some day she may tolerate it better. :)

Hallhunters
May 16th, 2004, 07:39 AM
hi there isaac is exactly the same he often has peeling fingers from touching things hot and its quitedistressing when you come to find out whats happened. i might ask edd why this is when i next take isaac to manchester. :cry:

PattyT
May 16th, 2004, 09:06 AM
Sheila,

Jesse loves to try and sing songs.. so I have picked some of his favorite tunes and make up funny words as we we go along to while washing his face and hair.. it gets him laughing now instead. With the bath, I have saved washing him until after he's been in the tub for 5 - 10 minutes, I put the empasis on getting in the tub to play with the toys he likes, then after playing for a short while, I wash his body first (quickly I might ad.. LOL!) Then wash his hair in the tub too.. I use a small sand bucket, hehe.. and pour water over his head now and we laugh and make believe it's a waterfall.. he likes that better than laying back with his head in a sink or shampoo chair... go figure.. of course I use a wash cloth to wipe his face so I can soap up his hair, then repeat the bucket wash for rinsing with tap water. (you have to be sure to use a NO tears Shampoo though :cry: ) Then I let him play for an additional 5 minutes or so. So now it's all become games and fun for him after 5 years.. Thank GOD!!! Bath time and wasking is much easier. Teeth brushing is still one of those hit or miss things... We sing while doing that evey morning and evening too.. Singing silly songs works well for him most days. :lol:

I hope it gets better for Shelby too.. :)

Hope some of the suggestions help too,
Patty and Jesse

May 16th, 2004, 11:04 AM
Patty your post reminds me of what we do with seth in the shower. Seth has all of the sudden not wanted to bathe or shower....so I made up a game for the shower (we have a removeable shower head), we call it "its raining, its not raining" (clever name huh?) it is exactly the way it sounds except when its not "raining" I say "its not raining you can go outside and play" then slowly move the shower head toward him and say "Oh, no here comes the rain you better get inside" usually I add thunder sounds and say its lightning. This keeps Seth laughing but usually he makes a mess with the water because he slaps at the water and it spills outside the tub.......we go through at least 3 or 4 towels so the floor doesnt get to wet :lol: I usually have to clean him and wash his hair quickly, and give him soap on his hands to help (so he is distracted). It is weird because he used to LOVE baths and I cant get him to take a bath its always a shower now. Kids are funny
Misty

Laura Brodie
May 16th, 2004, 02:56 PM
Misty + Sheila,
Will has been the same these last 2 yrs he used to love the bath now its such a battle -he wont sit in it at all just stands while one of us holds him and the other pours the jugs of water over him.He screams blue murder :8): :8): I have just about tried everything. In the summer(not that we get much of that here!!! :lol: ) he will happily go in the paddling or swiming pool! just can't work it out!! love Laura

ChrisMPS2
May 17th, 2004, 08:30 AM
We use a Teledyne shower massage for William. Sometimes he sits up nice and sometimes it takes two people to get his hair rinsed. He doesn't like the hair rinsing so we make it quick. He does like the shower massage on his back which is often sore from the scoliosis or some other stress on it.

That was the name of what we were doing to the scar on his face - debrideing - I felt so mean when we were doing it - I can only imagine what he thought we were doing!

Chris

MelI
May 17th, 2004, 05:33 PM
Hi Kim,

We have always thought Jake has a very high tolerance for pain. He does have mild carpal tunnel syndrome but his high pain tolerance is not just in his hands but everywhere. Just as the others have said, I have heard this is common for children with medical issues who potentially deal with different types of pain and discomfort on a daily basis.

A nerve conduction study was not part of the work-up for CBT 2 years ago but I have heard they are doing it more now because the kids seem to eventually need them. Jake had his first one in Feb. & has another one scheduled for Aug. My assumption is that everything Dr. K ordered is to establish a baseline on Ty and I personally think a nerve conduction study is a good baseline to have. Just a warning, the test can be quite long (Jake's was about 1 1/2 hours) and some kids find it uncomfortable. I had Jake's portable DVD player with us and he watched Dora DVD's the whole time. He didn't seem bothered at all.

Also, that sounds like the right Homewood Suites. You shouldn't be far from anything I mentioned in the last e-mail I sent you. Mkae sure and tell Jayne where you're staying and have her send you directions to stuff!

Good Luck!!! I'll be thinking about you! Melanie :)

momtoty
May 17th, 2004, 09:14 PM
Thanks Mel!

:) Kim

Jessica
May 18th, 2004, 08:32 AM
Sorry that I've let this thread get so long before commenting! I've been so busy this week.

Kim, I'm sorry about Ty's burn. Kaity always cried when she got hurt, but nothing like I've seen other children cry! When she broke her arm (her left humorous) she literally fussed not cried. This bone was broken completely in half!!! I would have been crying my eyes out!! :cry:

These kids amaze me at what they learn to deal with.

zacheys mom
May 18th, 2004, 01:54 PM
Zach was the same way.He used to clime into the gas fire place and get burned on the logs. He thaught it was fun. He got burned on the leg by a small BBQ one time and we did not even know.
So what I started doing was taking him around the house to all the hot things I could think of that might be hot and did the sign for hot and then made pictures net to the object with the sign hot.
But since he started ERT this has improve a little.
Hugs to all Shaun