Mast Cell Disorders Forum - Broken ankle, looking for opinions

ruth

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Broken ankle, looking for opinions
01/11/12 at 11:52:53

Cameron had a fall from his bike last night and has a fractured tibia. He usually tolerates pain pretty well but is really struggling with this. I have not had such an injury, nor have my other children, so I'm struggling a bit to know what to expect and what allowances to make given his other health issues. Usually I'm a bit of a tough Mum and encourage them not to miss school unless they really need to, and thought he would get back to school in a day or 2 ( and I had to ask the doctor for a certificate to have today off school, then he gave him 1day only). He is really struggling getting used to crutches, still in pain and fearful of further injury to his ankle. He will have stairs to deal with at school which will be a real challenge. He is short of breath very quickly getting about just at home. I am a bit torn between wanting him to bite the bullet and get on with it, he can't have 6 weeks off school, and he will need to face it soon. On the other hand his likely MCAD, (not yet diagnosed) and his severe vit D deficiency must be adding to the challenges for him. He is quite distressed at the thought of going back to school, but I feel a bit like he needs to get back there and realize he can do it, it won't be easy but he doesn't need to be so fearful of it. So if you have any general advice or encouragement about making these tough judgement calls as a mother I would appreciate it.

More specifically do you think I should look further into musculoskeletal concerns - given that he has possibly chronic elevated levels of histamine ( which from what I have heard can affect bone density) and has a severe vit D deficiency. The emergency doc said it was not a typical fracture, and he just landed on one foot as he came off his bike, but couldn't really explain what had caused it to fracture. He barely had a scratch on him, just this terrible pain from the fracture, so it's not like it was a bad fall at speed. From the Xray he didn't see any obvious bone density issues, but I'm not sure whether you would, or if there are specific tests that are done for density. Would you take a more direct approach in asking our doctor to look into it a bit more?

Ruth

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Joan

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Re: Broken ankle, looking for opinions
Reply #1 - 01/11/12 at 16:05:01

Hi Ruth,

Oh, that's too bad for Cameron (and for Mum)! I believe pain is worse when we're not feeling well to begin with.

If it were my child, I'd try to let him make the decision, if it's within reason. I would ask him if he needed another day off and then let him have one if he said yes. If there's a plaster cast, I'd find a few colored markers (permanent ink) so the kids at school can sign his cast and draw pictures on it. That might motivate him to go to school. I wonder if the school would be willing to recruit a boy who's a couple of years older (and bigger) to make sure Cameron has help on the stairs until he gets used to the crutches. If all else fails, bribery always worked with my kids, e.g., going for ice cream or a cupcake after school or getting to pick out something at a store or having a friend over to watch a movie.

If you have concerns about his bone density, by all means ask for one! It's a quick and simple process, if you haven't had one, and doesn't require any contrast. The screening tests here often measure the hip, spine, and wrist. With his low vitamin D and atypical fracture, I'd be thinking the same thing you are.

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DeborahW, Founder

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Re: Broken ankle, looking for opinions
Reply #2 - 01/11/12 at 16:09:18

Ruth, I am sorry to hear about Cameron's fall. I am happy to give you my advice, both as a mom and a tutoring director. How old is Cameron? Without knowing, I am writing my opinion based on the guess that he is in elementary school. It seems as if Cameron has a lot of anxiety going back to school both a broken bone. It also seems as if neither the doctor or the school intend to give him any sympathy and help him out.

I would say that you need to be very supportive of his fears and his feelings. After all, if he can't get that from his own mom, then where an he get it?! Before sending him back to school, I would call the principal of the school. Explain that the thought of coming to school on crutches is simply terrifying him. Ask if they can arrange a peer helper (one of his friends) to help carry books for him. Also talk to the teacher and see if he/she can work to alleviate his worry and also find a helper during class.

Perhaps you can walk him into school and meet him inside when school is over so that you can help him out to the car. When my little girls was in 2 walking casts on her legs at the same time, I did this.

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ruth

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Re: Broken ankle, looking for opinions
Reply #3 - 01/11/12 at 20:18:47

Thanks ladies for your comments. 2walking casts Deborah, that must have been a challenging time. Cameron is 15 and in HS, with exams looming in February, so the issues and motivators are a little different. He has also just landed the main part in the HS play, and rehearsals started this week. Usually he will drag himself to school no matter how bad he is feeling, especially if music or drama are on the schedule. He recently was most annoyed with me for not waking him to go to school the morning after a migraine, when I knew he needed to sleep it off. His reacton this time has surprised me, and tells me he really is needing the extra time, i have not seen him so despondent and despairing before. I do feel like it seems to be emotional as much as physical, and staying at home avoiding the problem isn't going to help, which is why i am finding this a tough call. The school are very supportive, and usually do things like buddies to help, but Cameron really likes to avoid attention and help for anything health related, so the thought of battling through every day exhausted and needing help constantly is awful for him. I will call my doctor today, she is a mother and may have a little more compassion and understanding than a young ER doc, I was just feeling like it was expected he should hit the ground running, and he's just not. He is still going to have to deal with the challenges at school, soon, but maybe he just needs more time, given that he is probably a lot more exhausted than an average teenager.

Thanks foryour encouragement, I appreciate it.

Ruth

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DeborahW, Founder

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Re: Broken ankle, looking for opinions
Reply #4 - 01/12/12 at 08:07:08

Ruth,

Well that is definitely a different scenario since your son is in high school. I guess you had better ask him if anything happened at school to make him not want to go. Bullying is rampant now, but luckily being spotted by friends and family. Hopefully he isn't experiencing any of that, but it is worth checking.

I can't figure out why a broken tibia would make him not want to attend school. I would keep asking him for more specifics, such as does he feel mast cell sick? Does he have a best friend who can help him out and encourage him to come back to school? You might want to ask him what he intends to do about the school play. Point out that it isn't fair to other people who wanted that role for him to skip rehearsals because he doesn't want to go to school. Maybe that will motivate him to want to go.

Petals something academic is upsetting him. Ask him if he wants a tutor, as that will relieve a lot of stress and anxiety for him. Even meeting a couple times a week with a tutor can work wonders if you find a fun, confidence building tutor. (I own a tutoring service and that is how I train my tutor to be. So I am a big believer in how much a tutor can motivate a student)

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ruth

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Re: Broken ankle, looking for opinions
Reply #5 - 01/12/12 at 11:40:35

Thanks for your comments Deborah. He was feeling a lot better today and more like himself again, and ready to try going back to school tomorrow. However being back on his feet a bit more we have discovered that he is still swelling up a lot as soon as his leg isn't elevated. In just a few minutes to go to the bathroom his toes are purple and swollen, so school might not be an option until that resolves. We will see how he is tomorrow and maybe aim to get him there for one block of classes. I spoke to the nurse at the orthopedic clinic where he will see a doctor next week, she seemed to think he needs be off his feet to keep it elevated all the time still and shouldn't be at school untilthe swelling resolves. So I've had the whole range of opinions, and feel a bit more comfortable with taking one day at a time. It helps to see him bouncing back today, I think he just needed time to get over the physical shock and exhaustion, and get the strength to manage on crutches. His other health issues must be playing into it a bit, and it's impossible to quantify that right now. The whole time we were at the hospital he was flushing and shaking, uncontrollably at times. Whether shock or MC related, that and severe pain are exhausting, and seems to have knocked the wind out of his sails, physically and emotionally. I don't think there are specific school issues, at least beyond what he can manage. It is a small caring school community, but he will still have to struggle up staircases in a crowd of teenagers, and I think he is just scared. Hopefully we will ease him back into half days, being strategic about which classes and quiet times to arrive, until we see the doctor next wek, and I will ask him about the bone density concerns. Thanks again for your ideas and support.

Ruth

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Lisa

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Re: Broken ankle, looking for opinions
Reply #6 - 01/16/12 at 06:27:26

Gee Ruth I´m really sorry to hear about Cam. I hope he´s doing better!! Forgive me for not seeing this post. The lights on my board are forever going off even when nobody has posted and it about drives me NUTS so I tend to ignored them and end up missing posts for this reason.

Ruth, the reason for Cameron´s shaking and flushing etc could have been due to the pain, but also due to having triggered the stress system due to the physical and emotional trauma and this in turn triggers the MC degranulation.

Regardless of the cause of the triggering, Cameron needed extra antihistamines to deal with the increase in MC mediator release. And I´ll bet you anything that he´s still battling this for the moment he broke his leg, the healing process is activated which means the MCs were activated since they are one of the key cells involved in healing the body. This is why he´s easily exhausted and is showing signs of more masto activity. You need to up his meds adding a 3rd dose especially due to the physical effort of walking about with a leg in a cast. He should be on a 3rd dose to be taken about 5 hours after his initial morning dose and then his evening dose another 5 or 6 hours later. He should also carry with him extra H1 blockers so that he can take this upon demand in case he ends up doing more reacting than usual and starts feeling ill. He´s plenty old enough to know what his body is saying and when he needs to intervene, so he should be able to control this situation being sensitive to his body.

If you feel that things are getting out of hand, write, or better yet, give a phone call to Dr. Escribano asking him for his help with this situation so that you can get Cameron more properly medicated and settled back down. He may not be able to help you without your doctor, however, so if he says he needs to speak with your doctor, get on top of one of them until they comply for Cameron needs to regain that stability again.

If you need any more help, send me an email, Ruth and I´ll get back to you as soon as I can.

Lisa

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ruth

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Re: Broken ankle, looking for opinions
Reply #7 - 01/16/12 at 11:21:37

Thanks Lisa. I think the flashing light thing is that it seems posts come back with a flashing light after a certain time has lapsed since anyone has responded to them. I look at the date of the last post to see if it is actually a recent post or not.

Anyway, my need when I was posted was for moral support as much as anything, just feeling a bit stressed and not seeing the wood for the trees. I was getting such conflicting opinions from all directions, and for whatever reason not feeling like i even knew what my instinct was let alone the confidence to follow it. Cam is doing a lot better now, he went back to school for half a day today, and will do the same tomorrow. He is tired but managing, and getting the strength and coordination to manage the crutches. In between times he is getting a lot of rest. He was given voltaren for pain, it is also an anti-inflammatory, and I'm wondering if this is actually helping him generally too. He will go to the Ortho clinic on Wednesday so I will see what I can get from that consult, it will depend on the doctor and how much English he speaks. After that I will talk again to the GP and plan to ask her to make contact with Dr Escribano, which was where I was heading before last weeks events anyway. In his email to me he offered to work with my doctor, and I think this might be a good start even though I am working towards taking Cam to see him. I want him to go back on ketitofen, but I want to see if Dr Escribano recommends any tests to be done before we do that. I know it is usually said that you don't stop taking meds for tests, but it seems that mast cell stabilizers would affect the levels that I think he needs tested, of the mediators like histamine, prostaglandins, heparin. Or he may recommend holding off on the MC stabilizer until we can see him, I just dont know yet how long that is going to take. I will keep you posted, thanks again for your advice.

Ruth

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Lisa

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Re: Broken ankle, looking for opinions
Reply #8 - 01/16/12 at 14:18:29

Ruth,

There is a NEW exam for anaphylaxis and mast cell activation that is going to take the place of Tryptase. Carboxypeptidase. This exam is now available in England. Write to Dr. Escribano and ask him if he knows where this can be done, if he does this exam or he can recommend lab there in Europe. If not, I'll see if I can help hunt this down as to where in the UK. This is most definitely an exam worth finding for it is much more sensitive of MC activation that tryptase and is beginning to be considered the upcoming exam for mast cell disorders, including MCAS.

If Cameron does indeed have MCAS, this is the exam you want to get for him. I'm trying to find out if there is any place here in Brazil, but I HIGHLY doubt this, but I'm even going to see if there is a university hospital here that may be able to send this exam to England otherwise.

So, see if Dr. Escribano knows. He might.

Lisa

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Broken ankle, looking for opinions Reply #9 - 01/16/12 at 18:20:09 What exactly is carboxypeptidase and why is it elevated in MC patients?
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ruth Guiding Light Offline I Love YaBB 2! Posts: 208	Re: Broken ankle, looking for opinions Reply #10 - 01/16/12 at 20:05:48 Thanks Lisa, very interesting. I will do some research later and see what I can find out. Ruth
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ruth

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Re: Broken ankle, looking for opinions
Reply #11 - 01/17/12 at 09:02:16

Joan I have done a litlle searching today, but not a lot of spare time for that at the moment. Carboxypeptidase is also released when mast cells degranulate, along with tryptase. There is an article from a journal of pulmonary medicine which explains it in detail, it seems to be connected to asthma and respiratory symptoms, but that is as far as I got with it. I will keep looking into it later in the week.

Ruth

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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Broken ankle, looking for opinions Reply #12 - 02/09/12 at 19:54:48 If you have a link to the article, I'd like to read it. Thanks!
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ruth

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Re: Broken ankle, looking for opinions
Reply #13 - 02/10/12 at 02:47:56

Hi Joan, there is a brief explanation and a link to an article on the IA information website in the articles section, titled Another marker for Anaphylaxis http://www.iainfoctr.com/articles/cpa.php

I also googled carboxypeptidase and read about it in Wikipedia for an understanding of it. There was one article which goes into scientific detail in the Am. journal of Respiratory Cell and Molecular Biology, no. 42, 2010, authors from San Francisco, Trivedi and Caughey (sorry, I kept the article but not the link, if you can't find it I can attempt to email it to you).

Ruth

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