chicken pox

Infants, Babies, Toddlers, Teens with Lymphedema, lymphedema chronic arthritis, pediatric lymphedema, debulking surgery children, arm and leg swelling in babies, daily care

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chicken pox

Postby dionneangman » Thu Oct 15, 2009 6:59 pm

Hi
My son Blake is almost 3 and was diagnosed with lymphedema in his right arm at 9 months of age (had it from birth but was misdiagnosed at first). We are wondering if any of your children have had the chicken pox and if there are any additional complications to worry about when the child has lymphedema. Thanks!
Dionne and Chris
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Re: chicken pox

Postby patoco » Fri Oct 16, 2009 10:03 am

Hi Dionne :D

I was born with hereditary lymphedema and had the chicken pox when I was about5 years old. I didn't experience any complications from it. But, the biggest potential problem will be a secondary infection if the little spots are scratched and opened up. You might want to take some extra steps to protect him from that. My grandson is just turning three and I can imagine that's not going to be an easy task.

BTW...we also sponsor a children's group:

Children with Lymphedema

http://health.groups.yahoo.com/group/ch ... ymphedema/

We have several hundred parents - all with children that have lymphedema. You might really enjoy the group, it's pretty awesome the way everyone jumps in and helps each other.

The most important thing too is that you get a management program in place. Ask for a referral to a certified lymphedema therapist. He can be evaluated and a program set up.

Pat
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Re: chicken pox

Postby dionneangman » Sat Oct 17, 2009 11:18 pm

Thanks Pat
Blake was being managed by a lymphedema clinic here in Calgary but it has been closed for a year now - the cancer board is now providing service to everyone with cancer and so of course he is not eligible to receive service there. We bandage his arm at night and he has a garment to wear during the day but the support he gets from the children's hospital here is negligible. Very little knowledge of the condition. His arm looks quite good - his hand is much puffier but very soft. We're not really sure what steps to take next at this point. Thanks for the link to the children's group. I'm sure I'll find lots of information on there - I had actually been there when he was first diagnosed but had for some reason not found the site again so I'm glad to have the link again!
Thanks
Dionne
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Re: chicken pox

Postby patoco » Tue Oct 20, 2009 6:50 am

Good Morning Dionne :D

I saw you did post on the Children's group....so glad to see you back. Hope they have been able to help. Don't hesitate to ask the group anything as it is amazing to me what a wealth of practical knowledge and info the group has.

I was just checking in to see how Blake is doing.

It's amazing to me what primaries are going through in Canada nowadays. Here it is 2009 and we're still fighting everywhere it seems just to get the basic treatment and care that just about every other condition takes for granted.

There have been a few parents who became so frustrated that they have actually taken courses in lymphedema treatment and are now even certified.

Our struggle continues......

My best to you all :!:

Pat
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Re: chicken pox

Postby dionneangman » Thu Oct 22, 2009 5:09 pm

Hi Pat
Yes it is frustrating - we had a great team of people at the Lymphedema clinic here and lots of resources - even though they hadn't seen many kids they were still very experienced in lymphedema itself. Now we are pretty much left to our own devices. As I mentioned, the folks at the children's hospital really don't have any idea what treatment is necessary -- we were telling them what was necessary. Even the pediatrician that diagnosed him didn't realize there was treatment necessary. My husband and I have recently talked about taking a course so that we "own" the knowledge rather than having to depend on someone else. Can you recommend any courses / training programs?
From what everyone has said on the Children's group, it seems as though MLD would be the best next step for trying to reduce the swelling in his hand and fingers but overall Blake is doing amazingly well. He has never complained about the night bandaging and actually he quite enjoys it because it means more stories for him at night! Because we've been doing it since he was 10 months old (he's now almost 3) it's just part of his life. He is starting to complain about the day garments though - not pulling them off, it is just becoming a bit more of a challenge to get them on him in the morning but - there will always be challenges! I'm sure that this is nothing compared to adolescence though so it's good practice :o
Thanks again for the information!
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