Searching for answers - Nine Month Old Baby

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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Searching for answers - Nine Month Old Baby

Postby patoco » Sat Jun 10, 2006 10:15 pm

Searching for answers - Nine Month Old Baby

Originally posted 06/23/2005 by Angie

Hello,

My beautiful daughter is now 9 months old,but when she was about 5 months we noticed that her right leg was larger than the left, not too sure what to do I went to ER and they just sent us home and said to watch it! Well I went back to our GP the next week and she sent us to a paediatrician, which couldn't tell us anything either so then sent us to Children's Hospital in Vancouver where we were told it was Lymphedema! Not prepared for the this label we had no question prepared for the specialist. Now we are at a stand still, waiting to get a second opinion in a different province and hopefully a MRI will be done. Wanted to start massage therapy (Manual Lymph Drainage) but no one will help us until a confirmed diagnoses is done with a MRI and Ecogram on her heart! So went back to our paediatrician and her says we don't need a MRI and her leg "MAY" get better and even go away. He wasn't concerned at all about it, But it's not his child either......! So we don't know what to do now, once she starts walking will it get worse? There is no family history of this.....everything that we have read says it's hereditary? She has been tested for Turner's and that negative, but have been told that usual Lymphedema and Turner's is associated. She also has been very sick since birth. She was breech and 5.5 weeks early, water broke went into labour and had emergency c-section. Now has chronic colds and never really happy. We have a 2.5 year old son also, so we know this behaviour with her is not normal. She doesn't sleep and usually cries alot. Don't know what to do or where to go now. Has anyone had any of these problems? What questions should we ask our new paediatrician?

Angie

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Responses

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Pat

Hi Angie

A warm welcome to our family here.

There are many number of reasons for lymphedema other than the hereditary factor. We have listed some 30+ conditions that have lymphedema listed as a complication. It is also possible that a nonhereditary based development occurrence happened that caused the developing lymphatics to be damaged.

It angers me as you are having to deal with an attitude that just seems all to prevalant in the medical community of "I dont know and I dont want to know"

Having said that I would recommend pursuing the MRI and ecogram as it is important to rule conditions out, as it will help move towards a correct diagnosis.

It may be also that you'll want to try and visit a certified lymphedema therapist to have her looked at and possibly find a doctor that is actually familiar with lymphedema.

If your in Vancouver BC, the headquarters of the Vodder School of Lymphedema Therapists is in Victoria. On their website they have a "find a therapist" page that you can go to and locate someone in your area. This is a top notch group of therapists and one I recommend highly.

http://www.vodderschool.com/therapist_search.cfm

Angie, you are so correct to not just accept what is being said. Just from what you have shared it is obvious that something isn't right and that she needs medical care.

Just hang in there my friend and don't let them wear you out. If this is lymphedema, it can't be just ignored and presuumed that it will get better.

I also wanted to mention one of our support groups:

Children with Lymphedema

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

It is an incredible group and I am continually amazed and pleased at the experience and knowledge these parent have and how everyone takes care of each other. Most of them went through similar frustrating experiences in getting a diagnosis and then treatment.

This is a start...a beginning. Very much look forward to hearing back from you.

Give your sweetheart a big hug from all of us!

Pat

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Silkie

Hello Angie

How Wonderful a Beautiful Daughter

I am glad you found us here Pat is as always giving terrific advice
I think to Our childrens group will help and amaze you
Every mom is there with help and advice
All the children and parents are like one extended family
The help and advice is wonderful and ongoing
and the pictures of the children are wonderful
and the improvements in limbs because care and knowledge
They even swop good places to find shoes or socks that will
cover garments Most of all they hel and support each other
Use the link pat has given you for childrens grp Angie
you will feel the support straight away
And follow Pats advice He is the best help and support on the web

Hugsssss for you Hugs for your beautiful Daughter i look forward to seeing her in our picture album in childrens real soon

silksxxxxxxxxxxxxxxxxxxx

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Coyote

hi angie,

thought I'd mention that all you need to see a lymphedema therapist for manual lymph drainage is a docotr's order to "evaluate and treat" lymphedema. If you can get a doctor to do the doctor's order, you can begin to get treatment for your child!

do make sure you have the other tests done to rule out other causes for the swelling. but, that doesn't mean you cannot get treatment to reduce and control the swelling now.

i do not know the differences in the canadian medical system, the information I provided is based in the US medical system

Good Luck!!

You came to the right place......Pat is the most knowledgeable person around that I've come into contact with about lymphedema.....way more knowledge than any doctor I've seen for the condition, unfortunately!!!

coyote

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Carmen

Hi Angie:

I replied to you on the other site (Yahoo) but forgot to answer some of your questions. As far as health is concerned, Sophie is the healthiest baby I have ever met. She has not had one cold yet, not even a sniffle despite some very serious fevers and infections that I, her father (had to go to the ER) and her nanny have had. We were totally sick around her and she did not catch a thing. She is a VERY happy baby. Hardly ever cries, except when she wants to be held, which is always. She sleeps through the night from 7PM - 7AM and has done so since 10 weeks. She loves to eat (obvious from her pictures) and is already starting on solids in addition to her 8 ounces of formula every 4 hours during the day. She weighed 19 lbs at her 4-month check-up and is above the 99th percentile for weight and height (proportional). She laughs ALL the time. She is extremely happy and bubbly and loves to hear herself make cooing noises. She does not suffer from any other conditions (asthma, etc...) and LE does not occur in either my husband's family or mine (that we know of). Though, she does have LE in her right leg from possible thigh (definitely knee) to foot. Hope this helps.

Carmen

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patoco
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New Grandbaby and in search of help

Postby Jimmie » Wed Sep 06, 2006 1:51 pm

Hi,
My name is Kathleen and this is my story. My son and daughter in law gave birth to a healthy baby boy on August 24. He weighed 7lbs 9oz. He was put in a baby bed while he was being checked by the attending RN's. I noticed that his little feet were swollen and red in color, with all of the excitement of finally seeing this little guy after all of these months I focused on the way he looked so much like my son. After a couple of hours and all of the stuff they do after they are born, I asked one of the nurses why were his feet so swollen? she said it was a genetic...something! I then had the attending RN contact the doctor on call to check it out. My son was with my daughter-in-law in the hospital room taking care of her. She had delivered C-section and we were with the baby in the nursery. The Dr. came and spoke with my son in the nursery and said he had never seen a newborn with anything like this and would have to go home a pull out is text books. This is when I knew that I would have to start my own research. I really, did not want to interupt my son and daughter-in-law's moment of the birth of their first baby so I kept it to myself. After, doing research I need the help of everyone out there for what is considered Millroy's Disease.
Thank- You so much and God Bless
Kathleen
Jimmie
 
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