Wednesday, October 26, 2005

Children's and Pediatric Lymphedema - Page One


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 and 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 mustrule 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 lesswhen 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

1 comment:

Amy said...

Pat,
I have a 7 yr. old that has secondary lyphedema. We have just started her on a compression pump. This is the first I've heard of complications resulting from using the pump on a child. Can you tell me where you got this information about these complications. Also, we are supposed to have a lymphoscintography done. What are your thoughts on that?
Thanks so much!
Amy B.