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LYMPHEDEMA CHILDREN'S AND PEDIATRIC

Children with Lymphedema

This page has been updated, please see:

Lymphedema in Children

http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_in_children

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Children's and Pediatric Lymphedema

Signs and Symptoms for Children's / Pediatric Lymphedema 

Factors that will determine Treatment of Children's Lymphedema

Treatment of Children's Lymphedema

Complications of Children's Lymphedema

Cellulitis

Long term prognosis for Children's Lymphedema

Stages of Lymphedema

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Discussion

There are several parents on our list with children that have lymphedema. If can be a frightening experience when this shows up and there seem to be little or no answers and you are terrified of what the future holds.

As someone who used to be a child with LE, all I can say is relax mom and dad. There are certain guidelines that apply to children with lymphedema as applies to adults as well. But, please let your children be children. I am turning 51 very soon and I have lived through falling out of trees, jumping off roofs, nails in the feet,
2 broken arms and even being knocked out.

Signs and Symptoms for Children's / Pediatric Lymphedema

There are almost no articles available for parents who suspect their child might have lymphedema. From my childhood, I am going to connect some threads that might help. If other readers have additional remarks or symptoms they noticed in their children, your input would be a treasure.

Naturally, anytime there is unexplained swelling in a child you must
rule out every possibility, this includes cancers, congestive heart failure or anomalies, vascular malformations to mention only a few.

1. The first question to ask is, has there or is there any history or record of unexplained swelling in your parents or their parents generation. Was here an aunt who suddenly started swelling after giving birth, was there an uncle that experienced an injury and suddenly had limb swelling? Remember back then there was no real concept of lymphedema as a distinct condition and certainly even less
when it came to such conditions being genetically based.

2. If your child is an infant, is the swelling sudden or has it been a gradual process. Often infants with lymphedema have periods of "bloating" or times when their limbs (more particularly legs) swell unexpectedly. With male infants, you may have times of unexplained scrotal swelling. Remember, these easily swelling more often than not can be transient. The limb maybe swollen one day, normal the next.

3. If there has been any swelling in a limb, how does it react to a mosquito, flea or other insect bite. In my left leg, which was the first to go "permanent" an a mosquito, ant or flea bite would become a major boil.

4. When there has been such an incident as an insect bite, or during periods of inflammation has you child experience a swollen and painful lump in the groin? That could be indicative of where a lymphatic blockage may be.

5. If there has been swelling and the child goes swimming, does it return to normal size? Swimming most mimics the naturally movement process of the body in conducting lymph that in very earl stages of lymphedema, the water pressure will cause the limb to be normal in size.

6. Meige lymphedema or lymphedema praecox presents itself at puberty.
It is assumed that the plethora of hormones gushing through a teen's body causes the lymphedema to go from latent to active. Has your teen or tween experienced any "out-of-the-blue" swelling? Was there an infection or injury that caused a limb to swell that did not return to normal.

Remember, I am not a doctor and these are just personal observations from my own experience. I hope this helps, and as I said if any parent has additions or differing symptoms, I would greatly appreciate your input. Maybe together we can build a database of symptoms so these wonderful children can get treatment sooner.

Factors that will determine treatment

1. Related medical conditions and your child's health. There are a number of hereditary syndromes associated with primary lymphedema and treatment for those conditions will need to compliment the treatment for lymphedema.

2. To extent of the lymphedema.  Considerations include if it is in one or both legs, one or both arms or if genital swelling is involved.

3. The stage of the lymphedema.  Usually children, due to age present with Stage 1 and as such it is much easier to treat successfully.

4. Your child's ability to tolerate certain procedures, therapies and/or medications.

5. Your child's overall prognosis. Again the consideration for this will include any related conditions.

6. Parents preferences

7. Age of your child

Treatment of Children's Lymphedema

As with adults with lymphedema, the preferred method today of treating limb (arm and or leg) is through decongestive therapy.  After undergoing therapy, your child will be fitting with the appropriate compression garments and you as the care giver will be taught compression wrapping and how to care for the garments.

I strongly suggest (plead) with parents do not let a doctor perform debulking or reconstructive limb surgery on your child.  It is almost never needed except in the most severe and otherwise untreatable situations.

For genital lymphedema, male or female the standard treatment is still surgery.  However, new massage techniques are and have been development (with support garments) that I feel will be more successful and less risky than the surgical techniques.

Because of the concern and risk of genital lymphedema, I also strongly suggest that parents not allow the use of compression pump devices on their child.  They have been shown to cause genital lymphedema and also damage the existing secondary lymphatics.

Another concern is that you and your child will need to learn proper skin care.  This will help prevent dryness, cracking and open areas that could lead to infection.

Complications of Children's Lymphedema

Because of the age, the complications involved with children's and pediatric lymphedema are not so severe as with long untreated adult lymphedema. They do include however

1. Risk for cellulitis, related infections

2. Weeping wounds, breaks in the skin

3. Spreading lymphedema.  Often legs may be involved initially and later the hands, arms or genital will become involved.

4. Complications involved with bandaging such as blisters, rubbed sore spots, rashes and other skin conditions.

5. There also may be pleural effusions or lung edema although this is not typical in children

Cellulitis

Acute Cellulitis is one of the complications of lymphedema. The patient may not be aware of the source of the etiology. Sometimes it may be a cut, mosquito bite, open wound or other infection in the body.

The first sign is increased or different quality of PAIN involving the lymphedema limb. The patients often describe this as a "flu like symptom or an ache" involving the Lymphedema arm or leg. This is usually followed by sudden onset of ERYTHEMA(redness, red streaks or blotches) on the involved limb. The HYPERTHERMIA(lymphedema limb becomes warm, hot) will follow and the patient may experience the CHILLS and even HIGH FEVER.


Long term Prognosis for Children's Lymphedema

It is not possible with certainty to guarantee what lymphedema will or will not do as a person ages.  Much of the long term outlook rests of the severity of the condition, complications that arise and other related medical conditions.

However, by having your child diagnosed early and by learning about and insisting on the proper treatment techniques you can keep the condition under control and your child can look forward to a long, active and enjoyable life - despite the lymphedema.

Stages of Lymphedema

Stage 1 (mild) - Upon waking in the morning the limb or affected area is almost a normal size. The tissue is still in a "pitting stage" ( when pressed by a finger the area indents and holds the indentation).

Stage 2 (moderate) - The tissue is "non-pitting" (when pressed by a finger the tissue bounces back without leaving an indentation). The tissue has a spongy consistency.

Stage 3 (severe) - The tissue at this stage is hard (fibrotic) and will be only slightly responsive to the touch. The swelling is almost irreversible and the limb is very large and swollen. Infections are possible at any stage of lymphedema but occurrence becomes greater as stages progress. A swollen limb, left untreated, becomes hard (fibrotic) and full of lymph fluid which is high in protein and a perfect medium for bacteria and infections.

Be sure to check through our entire page - updates.  Information at the bottom on wrapping a child's arm and leg, special tips for children with lymphedema, massage treatment techniques for children and more

Also, come join us at our Yahoo support group

Children with Lymphedema

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

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Here is an excellent article I ran across about children with lymphedema.

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Frequently Asked Lymphedema Program Questions

Q: My child's feet suddenly swelled. Does this mean she has lymphedema?

A: Many things, including abdominal masses, venous problems, and rheumatologic disorders, can cause immediate or rapid swelling of the feet. An appropriate medical exam and evaluation is necessary before a physician can rule out competing causes and begin considering a diagnosis of lymphedema.

Q: How is congenital lymphedema diagnosed in a child?

A: First, our medical staff takes your child's medical history and performs a physical exam. Depending on the results, the staff may schedule your child for a lymphoscintigraphy, an imaging test that allows physicians to view your child's lymphatic vessels. During a lymphoscintigraphy, a radiologist will inject a small amount of a radioactive tracer in your child's foot or hand, then use a special camera to view your child's lymphatic vessels. The radiologist can then make an accurate diagnosis, classifying your child's lymphedema by type: hyperplasia, hypoplasia, or absence of lymphatics. In some cases, the medical staff may order additional X-rays and imaging tests for further clarification.

Q: My child has a rheumatologic disorder that periodically causes her limbs to swell. Yet she also experiences limb swelling that does not seem related to her rheumatologic flare-ups. Could she have congenital lymphedema?

A: Our lymphedema team has evaluated several children who have inflammatory conditions, yet develop swelling at times when their arthritis does not appear to be active. After evaluation, we have determined that some, but not all, of these children also have congenital lymphedema.

Q: My child has congenital lymphedema. What sort of therapies will you use to treat her?

A: The medical team will create an individualized treatment plan for your child. The typical treatment plan involves avoiding infection in the affected limb(s) and using special garments, bandaging, or a Reid sleeve to provide compression to the affected limb(s) when your child stands. If those interventions are not adequate, the medical team may use lymphatic drainage techniques to stimulate the lymphatic circulation and help the affected limb(s) move extraneous lymph out of the limb. The medical team may also recommend the use of a gradient pump, a technology that our physicians have used with reasonable success over the past few years.

Q: Will my child need a special diet?

A: In general, children with lymphedema have normal digestive tracts and renal systems, and therefore do not need to follow special diets. Some children with lymphedema have a problem digesting protein, and physicians sometimes treat this condition by administering short-chain fatty acids. By and large, however, children with lymphedema eat the exact same foods as their peers.

Q: Should my child exercise? Will it help?

A: We encourage all of our patients to play sports and be active. If your child wears a compression garment while engaging in normal physical activity or playing sports, the exercise will encourage excess lymph to flow out of her affected limb(s) and back into her general lymphatic circulation. If your child exercises without wearing a compression garment, however, her exercise will not have any effect on her lymphatic flow.

KidsHealth.org

http://www.nemours.org/service/medical/orthopedics/lymphedema.html

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TOP TIPS FOR CHILDREN WITH LYMPHEDEMA

Children with Lymphedema Yahoo Group

http://health.groups.yahoo.com/group/childrenwithlymphedema/

It's always going to be different for every child, but things that

1. Not being too cautious. It helps my son's confidence if he can do
the things his friends are doing, so let them take a few risks if you
can

2. Keeping skin in good condition. We Aqueous cream night and morning -
in the UK you can get a huge tub on prescription. You can also use
it to wash with if skin gets dry. We also put emollient in the bath

3. Going swimming - like a gentle all-over massage

4. Trampolining (for lower limb LE)

5. Using SLD (simple lymphatic drainage) between MLD sessions

6. Sharing info with your child's teacher/school. As well as knowing
what to do if your child gets hurt, teachers can help in other ways.
For instance, my son was worried about other kids looking
at/commenting on his big leg/support hosiery in PE. His teacher
explained to the whole class about LE and why he wears a stocking.
The other kids took it all on board and don't make an issue of it any
more

7.  Doing things to make LE less of a bind and helping them feel a bit
more in control. Things like choosing own colour of stockings, having
a few hours without the stocking sometimes (maybe if they want to
stay in pyjamas in the morning at the weekend), choosing a favourite
story to take along to MLD, having time off school for MLD instead of
going after school, having a special day together when you go to the
clinic - like going to a film or having lunch out

Special Thanks to member and mom Katherine

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Lymphedema Program for Children

http://www.nemours.org/service/medical/orthopedics/lymphedema.html

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Compression Garments/Wraps for Pediatrics

E Lymph Notes Archive

http://www.elymphnotes.org/

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How Parents and Children Cope with Lymphovenous Disorders

Lymphovenous Canada

http://www.lymphovenous-canada.ca/chil_hsc.htm

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JoVi PAK PRODUCTS - Children

http://www.jovipak.com/custom.shtml

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The Treatment of Pediatric Lymphedema

E Lymph Notes Archive

http://www.elymphnotes.org/detail.asp?ci=37&it=IPI

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National Network for Child Care

COPING WITH ILLNESS


http://www.nncc.org/Health/coping.illness.html

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The Impact of Disability on Children's Self Concept

http://www.aare.edu.au/99pap/joh99515.htm

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Adolescent Chronic Illness - A Qualitative Study of Psychosocial Adjustment

http://annals.edu.sg/pdfJan03/OlssonCA.PDF

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Differential diagnosis of lower extremity enlargement in pediatric patients referred with a diagnosis of lymphedema. Apr. 2011

http://www.ncbi.nlm.nih.gov/pubmed/21187804

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NATIONAL LYMPHEDEMA NETWORK

Questions and Answers

Q: I am interested in learning more about treating infants six months of age or younger. I am looking for input regarding materials used for compression with special attention give to the needs of infants, which includes not restricting movement, the ability to adjust the compression for infant's small and more fragile body, etc. Also, I am interested in guidelines for when to start using compression bandages and garments, and if the compression is different from what you would use with an older child. I hope to hear from everyone who has experience treating infants. (Jane Reinsch, MA, PT)

A: Treating and understanding patients under six months of age is very difficult. I have treated a number of infants and found them to be a great challenge. It is very important that you work closely with the pediatrician and make sure that you have an excellent understanding of the patient's medical history (besides the lymphedema). Parent compliance is crucial in the case of infant care; their interest and involvement in treating the child daily is key.

There are mixed philosophies regarding how best to treat infants: some clinicians say you need to wait until the child is four or five years old. Others, like myself, believe that if the child is healthy, go ahead and start the CDP. At this young age, however, it is not advisable to do the lymphoscintigraphy — even though we do not necessarily know how much of the patient's body is involved — since it sometimes shows up in one limb initially, but may progress over the years as the child develops. This is also what makes it difficult to treat infants.

Manual lymph drainage should not do any harm if performed properly and with a little lighter touch. Massaging the baby and teaching the parents how to do the basic movements can also create a lifetime bond that can be very healing and supportive for both the child and the parents (there are studies to support this).

Light bandaging or use of a customized Reid sleeve is beneficial as well. A custom garment (Jobst, Barton-Carey) also works and, of course, helps to protect the skin from trauma. IMPORTANT: Make sure that the parents clearly understand the concept of CDP and that they take the child in for regular visits with the therapist or pediatrician.

Note: This, of course, is my own opinion. I invite other clinicians to respond to this question and to share your experience with infants

.Link no longer valid

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What Is Cellulitis?

What Causes It?

http://kidshealth.org/kid/health_problems/infection/cellulitis.html

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How Do I Know if I Have It?

What Will the Doctor Do?

http://kidshealth.org/kid/health_problems/infection/cellulitis_p2.html

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Treatment For Pediatric Lymphedema

http://lymphedema.articleinsider.com/73887_treatment_for_pediatric_lymphedema.html

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A retrospective study of the effects of the Lymphapress pump on lymphedema in a pediatric population.

Hassall A, Graveline C, Hilliard P.

Department of Rehabilitation Services, The Hospital for Sick Children, Toronto, Canada.

We studied the effects of the Lymphapress pump (LP; Global Medical Imports, Digby, NS, Canada) retrospectively on 16 children with primary or secondary lymphedema of the upper or lower extremities by measuring the volume and circumference of the limbs before and after treatment. We reviewed medical charts for data on age, sex, length of disease process, grade of lymphedema, frequency and duration of treatment, and pump pressures used. We recorded changes in limb size before and after pumping in terms of the mean percentage difference between the affected and unaffected limb at both time points to allow for growth of the child and the extremity. On volumetric measures, thirteen (93%) of the subjects showed a clinical trend towards sustained maintenance or reduction in size of the lymphedematous limb(s). The reduction in the pump pressure at start of the treatment to that required to maintain the size of the limb was statistically significant (p = 0.0036). Fourteen (88%) of the subjects had no complications directly attributable to the pump, whereas two had complications that were probably unrelated to LP. Overall, there was a clinical trend towards reduction or maintenance of the lymphedematous limb size in children using LP without notable adverse sequelae.

PMID: 11783593 [PubMed - indexed for MEDLINE]

Comment in:

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=11783593&itool=iconabstr

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Clinical heterogeneity in lymphoedema-distichiasis with FOXC2 truncating mutations. Children's Lympehdema

Erickson RP, Dagenais SL, Caulder MS, Downs CA, Herman G, Jones MC, Kerstjens-Frederikse WS, Lidral AC, McDonald M, Nelson CC, Witte M, Glover TW.

Angel Charity for Children-Wings for Genetic Research, Steele Memorial Children's Research Center, University of Arizona Health Sciences Center, Tucson, AZ 85727-5073, USA. erickson@peds.arizona.edu

BACKGROUND: Hereditary lymphoedema-distichiasis (LD) is an autosomal dominant disorder that classically presents as lymphoedema of the limbs, with variable age of onset, and extra aberrant growth of eyelashes from the Meibomian gland (distichiasis). Other major reported complications include cardiac defects, cleft palate, and extradural cysts. Photophobia, exotropia, ptosis, congenital ectropion, and congenital cataracts are additional eye findings. Recently, we reported that truncating mutations in the forkhead transcription family member FOXC2 resulted in LD in two families. METHODS: The clinical findings in seven additional families with LD, including the original family described by Falls and Kertesz, were determined and mutational analyses were performed. RESULTS: Distichiasis was the most common clinical feature followed by age dependent lymphoedema. There is a wide variation of associated secondary features including tetralogy of Fallot and cleft palate. The mutational analyses identified truncating mutations in all of the families studied (two nonsense, one deletion, three insertion, and one insertion-deletion), which most likely result in haploinsufficiency of FOXC2. CONCLUSIONS: FOXC2 mutations are highly penetrant with variable expressivity which is not explicable by the pattern of mutations.

PMID: 11694548 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=11694548&dopt=Abstract

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Pediatric Chronic Illness Resources

http://www.cfw.tufts.edu/rrviewtopics.asp?topicid=124

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Pediatrics - Lymphedema Therapy Program

http://www.njtopdocs.com/NJDoctors/office.jsp?officeID=441

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Brave Kids - Helps for Children with chronic, life-threatening illnesses or disabilities

http://www.bravekids.org/

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Pediatric Chronic Illness Conditions and Diseases

http://jama.ama-assn.org/content/303/7/682.extract

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Physiotherapy results in a baby with congenital lymphedema: a follow-up study
Türkan Akbayrak1, İlkim Çıtak1, Funda Demirtürk1, Mintaze Kerem2, İnci Akarcalı1
Departments of 1Connective Tissue Manipulation and 2Pediatric Rehabilitation, Hacettepe University School of Physical Therapy and Rehabilitation, Samanpazarı, Ankara, Turkey

Akbayrak T, Çıtak İ, Demirtürk F, Kerem M, Akarcalı İ. Physiotherapy results in a baby with congenital lymphedema: a follow-up study. Turk J Pediatr 2002; 44: 349-353.

Physiotherapy results of a 6.5-month-old baby with congenital lymphedema in the lower limbs are presented İn this study. Her motor developmental level and reflexes were evaluated and test results did not show any abnormal findings. Assessment of limb volume included circumferential and volumetric measurements, and photographs showing the changes in macroscopic view are presented. The physiotherapy program consisted of manual lymphatic massage, remedial exercises, multilayered inelastic compression bandaging, meticulous skin care and education of parents. The treatment lasted for 2.5 months, five days per week. Evaluations were done immediately after treatment and six months after treatment. The evaluations showed reduction in swelling after the treatment and this reduction continued during the follow-up period. It can be concluded that this physiotherapy program reduces the swelling in a baby with congenital lymphedema. Further studies are required in order to see the effectiveness of this therapy program in a greater number of subjects. Link no longer available

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New Day: Infant Massage Classes

Massaging your baby is a great way to start a loving relationship that will affect them their whole life. It’s an ancient tradition in many cultures and is now being rediscovered in the West. There is evidence that shows that a loving, touching, nurturing contact between caregiver and infant has a positive impact in their development. Infant massage is one of the easiest and most pleasant methods of providing early positive interaction.

The Importance of Bonding - Infant massage includes the critical elements of bonding- eye-to-eye contact, skin-to-skin contact, smiling and other facial expressions, soothing sounds and cuddling. The quality of closeness between parent and child is enhanced and a massage may provide a wonderful way to stay in touch with your growing child. Some of the benefits of massaging your baby are:

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WHAT DO YOU DO IF YOUR BABY HAS LYMPHEDEMA?

By Silkie

I have been searching every where to try and get information for our mums
And I am shocked, There is no help. I have been thinking what I would do
As a Mum.

I am a Mum with lymphedema, I could not sit and wait, till my chilld was 3

I would do simple routine with my baby.

1) In the bath I would always stroke the infected limbs upwards away from the fingers or toes. Playing and laughing making a game of it as we went along .

2) Never run dry a limb that has swelling pat and it must be thoroughly dry all the little creases in the limb take extra care with, Particular attention to between toes and fingers. The least tiny break in the skin can cause bad infection

3) Nail care. Toe nails always cut straight across keep them short as possible. If one caught on something and tore it could set of infection.

4) I would use a cream (non scented) on the limb paying attention to toes or fingers
all the time remember work up not down the limb and soft as a babies breath, stroke the cream up the limb even if only a few strokes let this be a fun thing, your preparing you little one for a routine that he/she will have to follow for life.
Always up the limb one- way don’t bring your hand back down the body in contact with the skin just upward stroke.
If there is any change in colour or reddening of skin stop this has to be so soft it does not change colour of the skin.

5) I am not suggesting you wrap but might be fun to get baby used to you handling the limb by pretending to. May be while your wrapping round do a nursery rhyme
the round a round the garden one something like that just all the time getting your baby used to the touch and feel of you doing these things.

6) I would always have the limb covered wither with long sleeves or pants again you will be helping you baby get used to having something on the limb at all times

7) Remember extreme Heat and cold are bad for lymphedema try to avoid at all times.

8) Always have some form of footwear on if the legs are infected remembering that the limbs can swell and a tight fitting shoe can not only rub the skin maybe causing an infection but also damage the development of baby’s feet.

9) Exercise is good for the limb. I have to do a foot exercise lying down I point my toes to the ground then back up again at the ankle. I lift my leg keeping it straight from the bed as high as I can, I try to draw my knees up to my tummy.
Little thing like that could be fun.

10) I did a bonding yoga massage with my daughter, I found the best place was on the floor. My legs in a diamond shape with big blanket over them and my daughter between my legs she was comfortable, we really had lots of songs giggles fun.

11) Baby’s bottom . I would be extra careful changing often, remember one tiny break in skin can allow an infection to start.


These are just my own thoughts on how I would try to deal with lymph if I had a baby
Let us hope you get help. But like one or two of our Mums have been told leave it to little. It must be agonising, if nothing else I would try to get my child used to the touch and feel of what is after all going to be their every day routine.


You may have your own ideas of how to Help your baby somwe things you have tried all ready If you have weather successful or not let us know lets get some personal experience together for others the positives and negatives.

Lets keep this information coming in. That way mums can find it and do what they think best but there are ideas to help

Silks
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Tips on Wrapping a Lymphedema Leg

One of the best posts on how to wrap a leg...from LLLymphedema2@yahoo.com

Since you have the swelling in the feet (and toes), it is probably lymphedema, perhaps compounded with lipedema. The traditional bandaging technique is with a stockinet, then some artiflex (cotton padding), and lastly, the bandages. I bandage directly over the skin. The padding is supposed to even out if you should constrict some part of the bandaging, causing the lymph not to flow, but the bandages are really not like rubber bands -- properly spaced and overlapped, they will not cause constriction -- and the artiflex is a pain. The stockinet is just another thing to wash and dry. I went to www.bandages.com and found that they have new bandages that are thick enough to be used without layering (e.g. the stockinet and padding). Perhaps this is the way to go, or perhaps you want to bother with stockinets and padding. If you were seeing a therapist, they would also use foam instead of artiflex (just cotton padding). Some pictures of bandaging look absolutely monstrous. My so called therapist used some foam, etc., but I soon discovered that the leg went down more without it. The pad is supposed to "spread" the compression so there is no binding -- but what really happens is all the elasticity of the bandages goes to compressing the FOAM -- not compressing your leg. A little compression trickles down to the actual leg, but my experience was that the swelling went down better without the extra stuff. However, since this is against tradition, you should at least be aware if any part of your leg feels too tight, and, if so redo the bandages (which is at least an hour for two legs -- and bandages that were OK while you were up and around can suddenly become too tight in the middle of the night -- which means you have to get up and do it again.) Anyway, with or without stockinet and padding, here is one technique for bandaging:

materials (1 large leg not grossly larger than normal (I am 5'9" and the calf measure is 21" and I have wide, swollen feet - if you are substantially larger, you may need more)

optional: stockinet, artiflex, foam

required:

1 roll 1" professional strength masking tape.
1 ea 3" strip of heavy padding around the ankles
1 ea 1" x 5m medi-rip
2 ea 8 cm. x 5 m short stretch bandages
1 ea 10 cm x 10 m short stretch bandages
1 ea 6 cm x 5 m short stretch bandages.

Double for 2 legs, if you are very much larger than me, add another 1 ea 10 cm. x 5 m short stretch bandage for each leg.

I sit on my bed and have a low table I can rest my foot on, but two chairs will work also (one to sit on and one to put your foot on).

Wrap the 3" strip of heavy padding (or chock pads) around the ankles. The figure 8's you are making around your foot and from the foot onto the leg will tend to bind right at the intersection of the foot and leg (where the 90" turn is made. This is the only place padding is essential. Secure it with masking tape. Secure all the bandages after they have been wrapped with masking tape. Cut a lot of 5" strips of masking tape and have them ready. Stick them on the edge of the table, or a windowsill, or something.

First hold all the bandages so that you are drawing from the bottom of the bandage cylinder (the bandages rolled up are a cylinder), not the top. A little experimentation will show you that this is much easier.

Start with the 1" medi-rip (it is a self cohesive bandage, but looses some of the self cohesion with laundering). Use this tiny bandage to bandage along the toe line. That is, make the same arc that the joints of the toes to the feet make. Do not bind the toes. If you can, wrap each toe with it, but I find that this binds the toes and hurts, so I leave my toes unwrapped, even though they swell, but if you start with the larger short stretch bandages, there will be a half moon that swells even more (Since if you make a straight circle from just below the little toe to just below the big toe, this will leave some area of foot not bandaged and the lymph will be pushed into this area, and it will be worse than before. The little 1" medirip can be wrapped in a curved path that covers all of the foot. Overlap this 1" medirep by 1/2 and continue winding it around your foot until you get to the end of the arch, then take it up diagonally over the top of the foot, and you will still have enough bandage to wrap again just under the toe line again for a few wraps. The medi wrap has strands of elastic in an otherwise cotton strip, so pull the medirip tight (that is the elastic is extended, but not to the point of discomfort).

When you wrap the bandages, pull a bit at the end of each circle, but do not stretch them too hard, or with constant tension as far as they will stretch. You want them to exert a little spring, but don't strangle your legs. If you get them too tight, it will hurt, and you must undo your wrapping and redo it (a big pain). If you don't stretch them a little, they won't have much compression. Of course, it's always the bottom bandages on the feet that hurt, so you have to unwrap the whole deal to get to them.

Next,step 2 take a 8 cm. x 5 m short stretch bandage, and start at the tip of the foot, but do not bind any toes, and since you already have the medi-rip, allow a little breathing space to make sure you don't bind toes. Then wind around your foot overlapping the bandages by about 1/2 to 2/3 (I probably overlap 2/3) until you have gotten almost to the leg (your foot should be at a 90 degree angle to the leg, and for me this is 2 or 3 wraps), then go around the heel itself, and, as you come off the other side of the heel, take the bandage diagonally up on the top of the foot to just below the top of the first wrap (just under the bottom of the big toe), go around the bottom of the foot, and then bring the bandage back around the ankle just above the heel, then around the ankle, and back up diagonally across the top of the foot just like before, overlapping 1/2 to 2/3 of the previous path. This will make large figure 8s. Continue with the figure 8's each layer a little higher around the ankle, until you again are wrapping just in front of the leg (no more space to do another figure 8) and use the rest of the bandages going in straight circles (not figure 8's) around the ankles.

Next,step 3 take the second 8 cm x 5 meter short stretch bandage, and start at the base of the leg (around the ankles), go around once or twice, to anchor the bandage, then on the next turn go down around the bottom of the foot close to the heel, and then around the bottom of the foot and then over and up around the leg, then continue making figure 8's up the leg overlapping by about 2/3. To make a figure 8 around the leg, on one side of the front of the leg, the bandage is going uphill (or towards your knee), then it goes more or less straight around the back of the leg at the high end of the 8, then goes downhill (or towards the foot), as you come across the front of the leg again, then more or less straight across the back of the leg at the low end of the 8 and then up again for the next figure 8. On me, this bandage is finished just about at the beginning of the calf (a little above the bottom of the muscle -- it would be ideal if this bandage ended just before the muscle begins, but it will be a bit different for everyone depending of how much they overlap and how large their leg is.

Next,step 4 do figure 8's with the 10 cm x 10 m bandage. Begin at the bottom of the leg with the beginning of the bandage facing upward, so the first direction is in a downward direction, (the end pointing up) coming around and then going up again. The 10 cm x 10 m bandage should take you up to just below the knee, but if the legs are very large, you may need another 10 cm. bandage. Each course of the figure 8 should overlap a little less or evenly, but not more than the previous course. The more you overlap the greater the compression, and you must always have less compression proximally (towards your heart) than distally (towards your toes).

Finally,step 5 take the last 6 cm. x 5 meter short stretch bandage and start at about mid calf or a little higher, and wind in straight circles until just below and as close as possible to the knee. This last bandage gives compression over the tops of the top 8's where there is not as much overlap, and sort of holds it all up, as the circumference of the leg is actually smaller at the knee than at the mid calf (doesn't slide down because a smaller circle would have to slide over a larger circumference of the leg).

I have been complemented on my ability to wrap, but It is hard to know if a novice can make much sense of my directions -- but I tried. Look at some photographs of the bandaging while you are at www.bandages.com. You don't see to many photographs of the figure 8's, but they give more compression and stay up better, and bind less. You will get the general idea of winding up the leg, and overlap by looking at the photographs, however. It may seem complicated to follow my directions (I tried to be clear), but the real technique is not very hard at all.

The new thick bandages that do not need padding (padding is included) are : KomprimED. They are located on the bandagesplus web site under bandages, then under two way stretch bandages. I think you should start with these, as the padding may be more important for someone who is just beginning bandages. This is much simpler than all those stupid layers.

*Soft and comfortable directly on patient's skin
*Thicker texture avoids application of foam and padding in many cases
*Suitable for lymphedema and venous ulcers
*Patient-friendly application requires less layers
*All bandages are short-stretch/low stretch
KomprimED 4cmx5m

Other wise, the standard short stretch bandages are rosidal or comprilan. I use rosidal. The medi-rip is under the section
cohesive bandages on page 2 under the more general category bandages.

...............

Special Thanks to: Linda

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SELF MASSAGE FOR CHILDREN'S ARM LYMPHEDEMA

Children with Lymphedema Yahoo Group

http://health.groups.yahoo.com/group/childrenwithlymphedema/

SELF MASSAGE FOR THE UPPER EXTREMITY

- Massage slowly, approx. one cycle per second
- Massage gently, approx. the pressure when stroking a cat
- Use the entire surface of the hand when massaging. Avoid digging in
with your fingers.
- Perform the entire massage in the sequence as specified in this
handout.

SEQUENCE OF MASSAGE

1. Apply circular motions to both sides of the throat, in the
triangular space just above the collarbone. Repeat 25x (I was told to
do in sets of 5)

2. Apply circular motions to both underarms. First to the uninvolved
side, then to the involved side. Repeat 25x each side.

3. Glide the hand across the from the involved underarm to the
univolved underarm, in this direction only. Repeat 10x

4. Apply circular motions to the groin of the involved side pumping in
an upward direction. Repeat 25x

5. Glide the hand from the involved underarm to the groin on the same
side of the throat, in this direction only. Reapeat 10x

6. Glide the hand from the involved shoulder to the same side of the
throat, in this direction only. Repeat 10x

7. Glide the hand from the elbow to the shoulder in three patterns:
a. from the front of the upper arm
b. from the back of the upper arm
c. from the inside of the upper arm in a spiral motion to the
outside of the shoulder

8. Apply circular motion to the front & the back of the elbow. Repeat
each side 25x

9. Glide hand from the involved wrist to the elbow, first to the front
side, then to the backside.

10. Glide hand from the base of the fingers to the wrist, in this
direction only. If the fingers are affected (Mia's are), massage each
finger individually from the fingertip to the base. Repeat each 10x

The BEST advice the LT gave me was ~ stroke Mia as if softly petting a
cat. That is the easiest way to understand how much pressure to
use/not to use.

Hope this helps!

Stephanie

Courtesy of:

http://www.fortept.com/index.htm
THANK YOU TO THE THERAPIST AT THE ABOVE SITE FOR SUPPLYING THIS FANTASTIC INFORMATION ON MASSAGE FOR OUR MIA

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WRAPPING A BABY'S LIMBS WITH LYMPHEDEMA

Children with Lymphedema Yahoo Group

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Amy - our daughter Jessica was born with LE in both feet/ankles and started CDT when she was a little over 2mos old. What we did then was a multi-stage process (the therapist could do both little legs in 20min, took ME 2 hours!)

1 - Wrap the toes only in a layer of 1in elastomull (dunno the generic term for this, it is a long, loose-woven (is that a word?) white bandage with a little stretch, but not as thick as a regular short-stretch bandage. Keep in mind we did this because she has LE in her toes pretty bad for her age - if your daughter has no toe involvement you might want to ask your therapist if you need to do this.

2 - We wrapped her foot, criss-crossed around her ankle, and up her leg to the knee with something called artiflex, which looks and feels like super-soft cotton balls pressed into badage form. This was to pad her foot/leg against any chafing that might occur from the later layers, we didn't start using a cotton stockinette for this til she was about a year old, and she still prefers it.

3 - A layer of 2in elastomull in the same patttern as the artiflex, stretching it a tiny bit while applying to give a little pressure.

4 - Finally! We topped it all off with a layer for self-stick bandaging called Coban (you can buy it in the store now under a variety of names.) This helped hold everything together and on, as she was learnign to crawl that was important. Toward the end of her therapy we found out the same product was made in colors and sold as vetrap in equine supply stores, and since it was about a $1 a roll cheaper we switched (ok, & cuz she was uber-cute in her color coordinated wraps!). That last sounds unimportant, but I know from at least one mom in the UK whose little LE girl is older that being able to treat with style becomes more important as our girls get older.

Hope this helps. As a last bit of advice, cuz we struggled with this alot when Jay was little, for baby shoes I recommend the Jumping Jacks Perfection bootie, bus it comes in WWW up to infant size 8. Her new podiatrist recently approved our buying her toddler shoes about a size too big to accommodate the swelling width/dorsum height of her foot, as long as we put a foam pad in the toes so her foot doesn't slide. She was so excited! We found her a pair of those toddler shoes with the LED lights in the heels and she won't wear anything else!

And, if you're wondering, no, we do not currently wrap, though I keep supplies on hand. We have her reduced enough to wear non-Rx shoes, and swim for an hour or so at least 3 days a week (joined a local Y with indoor pool). I still have mixed feelings about this, and worry whether we are doing the right thing, but we want her to have the opportunity to be as normal as possible, her pedi keeps anm eye on it with us, and we'll probably start harassing the new podiatrist to see her regularly as well. And, at 3 she can fight back. I was tidying up her wrapping supplies just this afternoon, re-rolling bandages that i had just tossed in the bag ages ago. She saw me and told me very firmly NOT to put that on her piggies! (Course she has an ingrown nail on one foot right now so she's a bit sensitive - you'll want to find a podiatrist for this to get the billing right if it happens to your little girl, this is Jay's 2nd in just over a year, on opposite feet, so this may be a recurring problem for her...)

I'm babbling, so I'll stop now, but post or email me if you have ??? and I'll answer to the best of my ability. When Jay was a baby I knew there were others with LE babies out there, but never found anyone to ask - everyone's kids were older... Anywho, hope this helps.

Dyanna
mom to Jay, bilateral LE in ankles/feet/toes, now 3yo

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Primary lymphedema of the genitalia in children and adolescents.

Ross JH, Kay R, Yetman RJ, Angermeier K.

Department of Plastic Surgery, Cleveland Clinic Foundation, Ohio, USA.

PURPOSE: Congenital lymphedema is a rare disorder that may result in disfiguring edema of the male genitalia. We reviewed our experience with 5 cases to advance our understanding of this challenging problem. MATERIALS AND METHODS: Four boys with significant lymphedema underwent excision of the involved subcutaneous genital tissue and coverage with local skin flaps. Two boys in whom this approach failed later underwent complete excision of the involved subcutaneous tissue and skin, and coverage with split thickness skin grafts. The boy with minimal edema was observed. RESULTS: Two of the 4 boys who underwent subcutaneous genital tissue resection and coverage with local skin flaps are markedly improved, although 1 requires further revision. In the other 2 boys treatment failed, necessitating repeat genital tissue excision and grafting. While there have been no recurrences in the grafted areas, each patient has required additional operations to manage recurrent edema in adjacent tissues of the perineum and inguinal region, and in 1 significant contraction of the grafted skin developed. Mild genital lymphedema in the remaining patient has remained stable during 10 years of followup. CONCLUSIONS: Congenital lymphedema of the genitalia is a challenging problem. Recurrences requiring multiple operations are common. We recommend expectant management of mild cases. In more severe cases excision without grafting should be attempted. While skin grafting may be the most definitive solution, it does not prevent recurrence in adjacent regions, and it carries the risk of skin contraction. Skin grafts should only be used when other techniques have failed.

MedLine

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9751400&itool=iconabstr

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Surgical management of congenital lymphedema in infants and children.

Fonkalsrud EW.

Of 67 children and infants with lymphedema, 28 had the congenital type. Congenital lymphedema appears during the first few weeks of life, frequently involves more than one extremity, and enlarges at a slower rate than general body growth. The swelling usually becomes less pronounced with age, and no specific therapy is required in two thirds of the patients. Seven of the 28 children had swelling of the upper extremities and a generalized lymphangiopathy syndrome. Subcutaneous lymphangiectomy was performed on ten of 28 patients who had moderate to severe swelling. Those with hand and arm involvement were particularly benefited; however, operations on the dorsum of the foot produced hypertrophic scars in one third of the cases. The operation is deferred until after age 2 years to permit optimal technical repair and to identify those patients whose conditions will improve spontaneously.

Pub Med

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=485822&itool=iconabstr

===================================================

Lymphedema People

Support Groups

-----------------------------------------------

Children with Lymphedema

The time has come for families, parents, caregivers to have a support group of their own. Support group for parents, families and caregivers of chilren with lymphedema. Sharing information on coping, diagnosis, treatment and prognosis. Sponsored by Lymphedema People.

http://health.groups.yahoo.com/group/childrenwithlymphedema/

Subscribe: childrenwithlymphedema-subscribe@yahoogroups.com

......................

Lipedema Lipodema Lipoedema

No matter how you spell it, this is another very little understood and totally frustrating conditions out there. This will be a support group for those suffering with lipedema/lipodema. A place for information, sharing experiences, exploring treatment options and coping.

Come join, be a part of the family!

http://health.groups.yahoo.com/group/lipedema_lipodema_lipoedema/?yguid=209645515

Subscribe: lipedema_lipodema_lipoedema-subscribe@yahoogroups.com

......................

MEN WITH LYMPHEDEMA

If you are a man with lymphedema; a man with a loved one with lymphedema who you are trying to help and understand come join us and discover what it is to be the master instead of the sufferer of lymphedema.

http://health.groups.yahoo.com/group/menwithlymphedema/

Subscribe: menwithlymphedema-subscribe@yahoogroups.com

......................

All About Lymphangiectasia

Support group for parents, patients, children who suffer from all forms of lymphangiectasia. This condition is caused by dilation of the lymphatics. It can affect the intestinal tract, lungs and other critical body areas.

http://health.groups.yahoo.com/group/allaboutlymphangiectasia/

Subscribe: allaboutlymphangiectasia-subscribe@yahoogroups.com

......................

Lymphatic Disorders Support Group @ Yahoo Groups

While we have a number of support groups for lymphedema... there is nothing out there for other lymphatic disorders. Because we have one of the most comprehensive information sites on all lymphatic disorders, I thought perhaps, it is time that one be offered.

DISCRIPTION

Information and support for rare and unusual disorders affecting the lymph system. Includes lymphangiomas, lymphatic malformations, telangiectasia, hennekam's syndrome, distichiasis, Figueroa
syndrome, ptosis syndrome, plus many more. Extensive database of information available through sister site Lymphedema People.

http://health.groups.yahoo.com/group/lymphaticdisorders/

Subscribe: lymphaticdisorders-subscribe@yahoogroups.com

================================================

Join us as we work for lymphedema patients everywehere:

Advocates for Lymphedema

Dedicated to be an advocacy group for lymphedema patients. Working towards education, legal reform, changing insurance practices, promoting research, reaching for a cure.

http://health.groups.yahoo.com/group/AdvocatesforLymphedema/

Subscribe: AdvocatesforLymphedema-subscribe@yahoogroups.com

Pat O'Connor

Lymphedema People / Advocates for Lymphedema

================================================

For information about Lymphedema

http://www.lymphedemapeople.com/thesite/all_about_lymphedema.htm

For Information about Lymphedema Complications

http://www.lymphedemapeople.com/thesite/lymphedema_complications.htm

For Lymphedema Personal Stories

http://www.lymphedemapeople.com/forum/forum.asp?FORUM_ID=7

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http://www.lymphedemapeople.com/thesite/lymphedema_wound_care_revised.htm

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http://www.lymphedemapeople.com/thesite/lymphedema_treatment_options_revised.htm

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http://www.lymphedemapeople.com/thesite/lymphedema_exercise_excercises.htm

For information on Infections Related to Lymphedema

http://www.lymphedemapeople.com/thesite/lymphedema_types_of_infections.htm

===================================================

Lymphedema Glossary

http://www.lymphedemapeople.com/forum/topic.asp?TOPIC_ID=247

===================================================

At our home page we have 18 categories with 218 articles on lymphedema, edema, and related conditions:

          The Forums

           Lymphedema Information

           Lymphedema and Edema Related Conditions

           Hereditary Conditions of the Lymphatics

           Related Medical Conditions

           Complications of Lymphedema

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            Resources, Organizations, Support  Groups

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=================================================== Updated Jan. 14, 2012

Home page: Lymphedema People

http://www.lymphedemapeople.com

Updated Jan. 14, 2012