Parents of Young Coumadin Patients

[Nick'sMom]

Hi Everyone!

I would like to talk to some parents that have young children on Coumadin. I have some questions about how you deal with things with your child's activities and school and the coumadin. If you could PM me that would be great!

Thanks!

 

[Ross]

Emma, GIJanet, your phone is ringing!!!!

 

[catwoman]

Emma, GiJanet, others:

Maybe these responses should be public.
Would someday help others in the same situation. They would be able to find the responses by doing an advance search; you can't do that with PMs.

 

[Curtsmum]

Yes it would be nice if you could also post replys, i have lots of worrys about school and things but dont ask at the moment because we are still in the waiting room.

 

[Gnusgal]

I did not take coumadin as a kid, but I did deal with heart stuff all my life. I can't give you specific advice about coumadin, but I can say this: don't try to put your kid in a bubble. Yes, he may get hurt, and yes, it may look worse due to the coumadin, but kids need to be kids. At an early age you may need to be more watchful, but eventually your kid will know his own limitations and watch out for himself. Doesn't mean you'll stop worrying, or that he'll not get into a little trouble now and then, but if you are open and honest with him about things he will be much more likely to take care of himself. Make sure he has a Medic Alert bracelet or necklace so that if you aren't around and something happens the docs can get info quickly and accurately.

That's all the advice I have for today (gotta get to work). If you need any opinions from a "heart kid" feel free to ask away. Good luck!

 

[ALCapshaw2]

I received a PM from Janet recently (valve discussion) and she indicated she was extremely busy and not able to keep up with everything on VR.com.

Perhaps an e-mail or Private Message might get her attention (Screen Name Gijanet)

Here is her signature line info for reference.
You probably can't find a more experienced 'Heart Mom' than Janet (or Emma)!

Janet, mom to Trip & Katie (my CHD child)11-19-00; heterotaxy syndrome w/dextrocardia, situs ambiguous, polysplenia, CAVSD, DORV, L-TGV, BSVC, PS, IIVC, & a leaking common AV valve (mitral & tricuspid are merged); now 5 surgeries under her shirt; we took advantage of the 2 for 1 OHS sale on 7/12/05 at UofM by the gifted Dr. Bove; fontan & valvuloplasty of common AV valve; then valve replacement w/a Carbomedics prosthetic valve

carepage at www.carepages.com carepage name: KatelynSteffen

'AL Capshaw'

 

[ALCapshaw2]

Holly,

Another Great Source of Coumadin Information is AL Lodwick's website www.warfarinfo.com

Al is a Registered Pharmacist and Certified Coumadin Care Provider who manages his own Coumadin Clinic in Pueblo Colorado. He has written a book on Coumadin and testified as an expert witness. He also monitors the AntiCoagulation Forum on VR.com and will respond to e-mails or Private Messages.

'AL Capshaw'

 

[Nick'sMom]

Nicholas has a medic alert bracelet. I did make sure that we got that as soon as we got home from the hospital.

The reason I wanted to talk to parents of young coumadin patients is because I was wondering how much they understand about being careful and avoiding potentially harmful situations? Nicholas is 11yrs; however he has Down Syndrome and is mentally about on a 4-5 yr old level. He is very hard to reason with and doesn't understand to stay away from potentially harmful situations. If someone hits him, he just stands there, he doesn't move. He is partially mainstreamed at school, his special education class has nine children in it. At least four of the nine children have hitting problems (they also have communication issues, which I'm sure is part of the reason for the hitting, but it's still an issue) and one child in particular hits, pinches, and she also jumps around alot. These children are just like Nicholas, they don't understand his condition (for lack of a better term).

I spoke to my Dr's office several weeks ago about my concerns (2 weeks before he was to go back to school) and they agreed that Nicholas would need a one on one assistant at least for the rest of the year and for summer school, until we get his coumadin regulated and we would re-evaluate the need for the aide at the beginning of the next school year. Now all of a sudden after talking to someone from his school they've changed their mind. They said that they can't make the school hire someone for something that might happen, that I can't put him in a bubble because he's no different then any other child. Well he is different (at least a little since he has a disability). In his special education class normally there are 3 adults in his class and that was part of the reason for their change of decision, but alot of times one of the adults is out running copies and doing various things outside the classroom. Plus when one of the adults takes him and 3 other kids to their 3rd grade class, it's just that one adult with 4 kids. If she leaves to take one kid to the bathroom, then you've left a teacher with 20+ kids and if something were to happen to Nicholas she wouldn't be able to leave the room to get help. Not to mention that 2 of the kids that go with Nicholas are 2 of the hitters mentioned previously.

I've talked to his teachers at school and they all agree that a one on one aide would be good for him at least to begin with and plus it would be a reminder to everyone to be a little more careful around Nicholas.

When I spoke to the Dr's office yesterday I think what upset me the most was when we were talking about how he needs to have as normal of a childhood as possible, they mentioned letting him go to recess and playing on the playground, she said maybe not the monkeybars since he could fall and get hurt. I said well they aren't going to let him go on the playground because the monkeybars are his favorite and you can't reason with him as to why he can't go on them anymore. So it's easier to avoid the situation (where and when possible), not to say he isn't going to be given the opportunity for recess and play, just not on the playground. The Nurse Practitioner got very upset and said that the only thing that should be restricted is his PE. I said something about him not going on the playground because it's too hard for him to understand about his restrictions and she said well then I guess you let him go on them and he'll have to learn the hard way. I almost lost it on her, I started crying. I know it's probably stupid, but that's not something I want him to learn the hard way. As a mother I thought you were supposed to protect your children as much as possible, not put them in a dangerous situation.

Anyway, sorry for the long post. I was just looking for some advice on how you make your children understand about being careful and aware of things going on around them (especially at school) to see if that will help me with Nicholas.

Thanks!

 

[Curtsmum]

So sorry to read your post, of course you want to protect your child and do the best you possibly can for him, like any parent. The only stupid thing i have read in your post is the advice from the nurse practitoner and i wouldn't be very happy with that advice. My son is able to fully understand, so it may be a little easier for me but i know i will still find it hard to handle. Iam sorry that i can't help you out more as we are not at the warfarin stage yet. Just wanted to wish you good luck and i hope somebody as some better advice for you. Paula

 

[Lynlw]

Sorry you are going thru this. My son isn't on Coum, but I just remeberred one of my good friends son is about 7 w/ both DS and CHD, I can't remeber if he is on coum, but if you would like i can email her and ask. Also I was wonderring if you are also on any DS online groups, Since many times kids w/ DS also have CHD/valve problems, maybe another mom there has the same concerns or suggestions. I can ask Allison about if any of her online DS/ CHD Mom's have been thru similar school issues. The only thing is she she works alot of different shifts so it may take a day or so to hear back from her.
sometimes it is just tough being a Mom, Lyn

 

[Nick'sMom]

Lyn,

That would be great if you could ask your friend. I do belong to a couple DS support groups and lots of the kids have had heart problems, but none have gone through valve replacement and are on coumadin. He has 4 other DS kids in his class at school and non of them have a heart problem at all. I am looking for any and all advice/support I can get.

Nicholas is going for his 11yr old checkup today and I am going to chat with his pediatrician about this situation and see if there is anything that she can do to help me out.

I also have a call into the Down Syndrome Clinic here at Kennedy Krieger to see if they have any patients that are on coumadin and could offer some advice or support, not sure how long that will take though.

Thanks!

 

[Emma]

Hi,
My daughter Chloe has been on warfarin (coumadin) for 6 years now. She doesnt have Down Syndrome but was born with the heart defect most commonly associated with it - complete AVSD - and so has the mechanical mitral valve and warfarin that a few avsd patients end up with.

As for living with it at school etc. it's been 'fine' so far! Chloe is 7 and has done near enough everything her friends have done withi reason. Maybe if I explain the only things I restrict her on it may give you more of an idea of how much of a normal life children can still have on warfarin...

In her school playground there is a high slide and I've banned her from that as its a huge drop to concrete if she were to fall, and as she had a shaky start to life, walked late etc, she's not the most steady on her feet, although she'd like to think she is!! So thats one no no.
I'm actually having to think really hard about any other restrictions as there are so few... She knows if she falls in the playground she will bleed more than other children and knows to hold something against it straight away to start to stem the flow.
I also ask her not to climb right to the top of the wall bars in the gym at school as that too is a big drop to a hard floor, but other than that I can't think of any restrictions we place on her, or have been asked to by doctors - they have always told us to avoid contact sports such as football or anything where she is likely to get run into but luckily she isnt into them anyway.

To try and relate it more to your son's age... Chloe started school at aged 4 and went to pre-school almost full time before that so has been in schools from the age (and younger) that your son is mentally now and has always coped very well. She has had her bumps of course and been to hospital a couple of times for a bump to the head and stayed in overnight for obs but nothing worse than that.

I am totally with you on the worry thing though!!! I have had my share of sleepless nights with warfarin worries but have to say this site has helped immensely with putting things in perspective and seeing that a perfectly normal life is possible with this drug.

I used to tell Chloe (from about aged 3) that she had a poorly heart and thats why she takes medicines. I also told her that one of those medicines makes her blood different and that if she ever bumped herself and no-one had seen, that she was to go and tell them straight away so they could check her out and make sure her blood was ok (I know this isn't correct technically but it was the only way I could get a pre-schooler to see some kind of seriousness in it without scaring her). At least this way I was pretty sure no bump would go un-noticed causing bleeds later on.

Also I drummed into her schools about her condition and gave them a care plan which I wrote with everything set out in very basic terms about what they were to look out for and what she can and can't do due to her condition and her drugs. I can email you a copy of the care plan if it would be helpful to you????

I think were I in your shoes I would push for the one-to-one support for your son. I teach in a primary school here in England and I know our system for special needs is probably very different but over here, when parents make the right noises about wanting support for their child, loudly enough, it happens! It may take some time but you'd get there!

I'm not sure I have helped at all as I've really waffled but basically Chloe lives a VERY normal life!

Please ask if I can help any more or make anything I've said clearer??

Love to you
Emma
xxx

 

[Emma]

Thinking about it, would it be helpful for me to put Chloes school care plan on here for others to see and adapt or ignore as they'd like?? It seems to have worked quite well for us and Chloe's teachers have always understood and used it to refer too?

Emma
xxx

 

[Curtsmum]

Emma

Emma

I would love to see a copy of Chloes school care plan, althow we are not in need of it at the moment it is always good to be prepared. Emma i will be looking out for you the day Curtis goes on warfarin for your advice and Holly i really hope you get this sorted out. Paula

 

[KeegansMom02]

Youngins on Coumadin...

Youngins on Coumadin...

Hello!!!

I am REALLY bad about getting on the forum! I wish I was able to come more often! I have a little one on coumadin...He doesn't have ds though...

I have a bit saved about him that I just cut and paste so I don't have to rewrite all the time, but here's his story...

Keegan was born with 2 very large VDS's, MV insufficiency, TV regurgitation. He was in heart failure when born as well...

They tried to hold his o/h surgery for as long as they could, but I had a 9 lb 2 mo old that couldn't keep his eyes open...They decided it was time. When we went in for the consult with the surgeon, Dr. Campbell at Denver Children's, we were told that there were going to be 3 options...(They diagnosed him with a cardio cath a few days prior.) 1) If the valves weren't too bad, they would repair, and he'd have an 80% survival rate, If the two valves were too bad and unable to be repaired they would replace them (something that a lot of surgeons don't widely use.) and he would have a 20% survival rate, if there was nooooo way to repair or replace, they would put him on the transplant list, but as bad off as he already was, he's probably pass before getting a new heart...



His TV was not so bad at all, they uses excess tissue that he had from being in failure, to stretch a "make a valve." His MV was severe. He said it looked like it had been chewed on and spit out...They had to replace it with a St. Judes Mechanical MV. They didn't make those for infants, so Dr. Campbell placed it at an angle in hopes that it would do the job...



Now that he has the Mechanical MV, he is on Coumadin for life...

He will have to go back in his early teens to have it switched out again, unless it clots sooner, God forbid...He does have a lot of restrictions, and his Coumadin levels are a pain to regulate! He has a stroke post op, and he was supposed to be a vegetable for life, but obviously he isn't. Kids are quite resilient!!! His chest in concaved, Dr. Washington, his cardio, asked me how I felt about that at his last appt. I told him that I will not OK a chest reconstruction at this point. That since it was just for cosmetic reasons, Keegan can decide when he has his next valve replacement if he wants it done?

So that's our story...
Keegan will be 5 in August. I have tried to explain to him but he either doesn't understan or doesn't care! We've had our share of crazy boy accidents...He will start kindergarten in August, I'm nervous but I don't know why? He has been in daycare or pre-school since he was 2...I have always just been VERY anal about letting the provider or nurse know the ins and outs and what to watch for and what to do in case of...

I totally understand your concern. Especially when the child doesn't realize that they need to be careful as my son!

I'm sorry I didn't see this earlier! Like I said I'm so bad at being on the board. If you would like to talk further, I can be contacted by e-mail...
This is my work mail and I'm ALWAYS on here...
[email protected].

Good luck to you!!!!

 

[briansmom]

My son is 16. He had to give up his life passion of riding and racing off road motorcycles because of the coumadin (and the heart condition). If he were older and more mature, I would probably let him ride. As you can see from my avatar, I let him drive an off-road car. My current take on the coumadin issue is that I am mostly concerned with a brain bleed, followed by an internal bleed. Average cuts, scrapes and bruises will be worse, but manageable.
If your son were not DS, I would say you could relax a bit, but the DS is a wild card - especially the other special needs kids. I try to remind myself that "quality of life" is just as important as "quantity of life". I think that basically means that mom's "quality of life" AND "quantity of life" is reduced from all the worrying, but hopefully the child's quality and quantity is increased.

I don't think that there is an easy answer.