What’s On Your Mind? Q&A
The following answers are general. Every case is different and unique, and the answers to these questions should be based on the individual patient. Therefore, these answers do not reflect a personal medical history of any patient, and should be viewed as a guideline.
TIP: Our medical advisory teams recommends to not allow yourself, or your primary care provider, to blame CMTC for everything. While it can be responsible, many things can occur without a vascular malformation diagnosis.
Markings have faded over the first couple years of life, but have recently noticed little red/black dots in many areas. Some have faded and some have not, are these anything to worry about?
- The first thing to rule out is if lymphatic vessels are causing these, as these do not typically reveal themselves right away, but over time as the child grows. It is important to address whether these are ulcerating, breaking open, causing pain. Always assess for changing skin lesions, and consult your doctor.
Is there a risk of thrombosis when IVs or injections are in limbs where markings are located? And, should blood pressure be taken in affected limbs?
- The risk for thrombosis is present because you are potentially injecting into an abnormal blood vessel.
- People without CMTC are at risk of infiltration (the inadvertent administration of parenteral fluid into tissues) of an IV; however, this risk is higher for those diagnosed with CMTC due to abnormal vessels. Therefore, it is best to NOT administer injections or place IVs in affected limbs.
- Blood pressures are not as accurate when vascular malformations are beneath the cuff, as these are not normal blood vessels. The norms for blood pressure assessments is based on normal blood vessels.
My child was diagnosed with CMTC. We are noticing visible “blue” veins on the CMTC leg, where markings are located and where they are not. Is this something to be concerned about?
- The skin is not of the same consistency in CMTC. Therefore, these can be normal veins that are present, and generally nothing to be concerned about. Please note: there should not be large malformed veins involved in a CMTC diagnosis.
Are cysts common in vascular malformations? If we see these on our child, what should we do, if anything, about them?
- Cysts occur when a change happens within the skin, causing the cells to become walled-off. Various cells can do this, and this is why there are different types of cysts. It is rare to see a true cyst in vascular malformations. However, it is possible to have a soft, well circumscribed growth that should be assessed by a dermatologist.
Why would a doctor recommend to “delete” a vein. What would be the purpose, how is this done, and is this a good idea?
- To delete a vein, means to sclerose the vein to stop the transport of blood through the vein. This procedure would be done to stop pain, dilation, and/or clotting within the vein. Interventional radiologists would not recommend this procedure if there are no symptoms, due to no evidence to prove this as beneficial without symptoms.
A young lady diagnosed with CMTC, leg length discrepancy, and atrophy in right thigh and buttock. As she ages, what are any potential problems we should be on the lookout for?
- The skin is not of a normal consistency with a positive ability to heal. Therefore, be mindful of adequate care for cuts, lesions, sores.
- Choose your exercise options carefully, perhaps swimming as opposed to sports that could incur contact that would be harmful to the skin.
- With age, veins will become a problem as they do not retain a consistent diameter, leading to venous stasis (slowing of blood flow). Malformed vasculature of CMTC can worsen the effects of venous stasis.
- The LLD can lead to back and hip issues as the individual ages. Continue assessment in orthopedics to maintain proper alignment by means of lifts, etc.
Is massage therapy recommended for children with hemi-hypertrophy?
- Massage therapy is typically not recommended for vascular malformations.
- This is a common recommendation for lymphatic malformations.
- If there is a secondary diagnosis of a lymphatic malformation, consult with a physical therapist and/or occupational therapist.
What is the difference between a port wine stain, those of KTS, and those of CMTC? Do they all change in color with the temperature?
- A port wine stain is red and confluent (flowing together or merging). The markings of CMTC is mottled, or of a fishnet-like pattern.
- All vascular malformations change with temperature.
Why does it seem my child cries more when the temperature outside is much warmer? Does the warmer weather cause changes in the veins where the markings are located, causing her pain?
- Blood vessels constrict and expand depending on temperature. Those who have a more difficult time regulating their temperature due to abnormal blood vessels, can experience pain associated to the warmer temperatures. These individuals are also at risk for dehydration cause by inability to regulate heat.
- Consider looking for cooling vests, the time of day to be outdoors, spray bottles to help cool the body. Signs to look for: they may or may not tell you they’re hot, they are not sweating, they do not want to play, irritable, do not want to eat, just not themselves.
- This pain can also occur during times of colder weather.
At what age is it recommended to do something about a leg length discrepancy?
- This depends on the growth of the child, with a later age for boys due to their growth spurt being later than girls. Orthopedic doctors typically begin discussing this around the age of 10 to 12. It is important to communicate with these doctors early, to consider the plan for the future.
Does CMTC come and go? My child has markings that we see all the time, sometimes faint and sometimes darker depending on temperature. But, we also see some that become visible only during times of stress, that are rarely visible any other time. Why?
- During times of stress your body releases hormones as a response. Endorphins will cause blood vessels to vasodilate or vasoconstrict.
Why do markings fade significantly during times when a baby breastfeeds?
- One reason could be due to the baby being warmer as he/she is being held.
- A baby is typically relaxed during these times, and blood vessels dilate allowing blood to flow easily to the GI tract for digestion diverting blood from the skin.
Do we know yet if children can pass CMTC, or other vascular malformations, onto their own children one day?
- Yes, possibly, and no. If it is discovered that CMTC is a germ-line mutation, then the answer would be yes.
- But, it is hypothesized that CMTC is a somatic mutation, and this changes the answer to possibly depending if the sperm or egg have the mutation.
- However, if the mutation occurs later in gestation, then the answer would be no. At this time, it is thought that the risk is very low.
Is there anything to avoid or take caution with for vaccinations?
- Our doctors recommend to not use the diagnosis of CMTC for a reason to not vaccinate a child, stressing it is not a contraindication.
- As far as location for the injections, take caution regarding frequency. Sometimes it is important to alter the time frame of the injections to avoid using the same area repeatedly, due to delayed healing of the skin.
Insect bites seem to be causing more swelling and redness, are there precautions we should be taking? Is this related to a CMTC diagnosis? What ointments would you recommend?
- There is no evidence of an immune system dysregulation at this time. This is likely related to how the skin is different in CMTC, making things look worse.
- Use protection before going outdoors. Protect with clothing and bug sprays.
- Severe reactions, consult with a doctor for a topical steroid, as OTC ointments do not provide adequate benefits in a timely manner. Antihistamines are also beneficial.
It’s difficult to control scratching when bitten by an insect. Is my child more at risk of infection due to his vascular malformation?
- Infection can occur with the breakdown of the skin in anyone. After applying an ointment, always apply a covering to the affected area. DuoDerm is an adhesive covering, that remains in place more effectively and is more difficult for a child to remove.
- A distraction basket can also be helpful. Keep a basket of items that will keep little hands occupied, and away from the area.
Are people with CMTC more prone to cellulitis?
- There is no evidence to this.
- However, it could potentially present. Cellulitis is generally associated with lymphatic malformations. Often times, there is a secondary diagnosis responsible for the other symptoms.
What are the benefits of compression stockings? Who should wear them, and who should not wear them?
- Compression stockings assist the veins to provide venous return. Patients with lymphatic and venous malformations can benefit from these.
- If the garment is extremely uncomfortable, causing pain, making symptoms worse…do not wear them.
- It is important to have a scan to confirm they will benefit you in a positive way.
- If your diagnosis is an AVM (arteriovenous malformation) you do not want to wear these.
Why does it seem my child takes longer to heal from cuts, scrapes, and bruises when located on markings? Why isn’t it shorter with the increased blood flow?
- This is not related to the blood flow, it is about the consistency of the skin. Any changes to the dermis results in poor healing.
Why does my child’s CMTC change from red to milky white to purple? Also, sometimes the markings look like they are outlined, lighter in the center and purple on the edges, why?
- This could be related to temperature, vasodilation, vasoconstriction. Is the child anxious, stressed, calm? People who are not diagnosed with CMTC can present with Cutis Marmorata; therefore, the changes your child has depends on the situation and how the vasculature is being affected.
- If this is coming and going, resolving in it’s own, and the child is behaving normally for them, do not worry.
- If this continues for 24 to 48 hours consult your team of doctors.
What can we expect when seeing a VAC team?
- All teams can be different. They will meet as a team to discuss each case. They often review before the patient arrives, assess the patient together, and finally discuss how to move forward with the plan of care. You will receive some answers while you are there. However, more answers can come after the consultation as each discipline brings their findings to the table for discussion.
- The needs of the patient dictates what discipline is present during your appointment. But be aware, there could be 6 to 10 doctors and a nurse coordinator at your appointment. This can be overwhelming.
Who should have laser treatments and who should not? What are the associated risks? And, is there pain involved?
- There can be variable pain involved, some tolerate it and some do not. Depending on the age of the patient and the extent of the marking, this can be done with a topical numbing agent or under sedation.
- For CMTC, laser has been tried and it can be lightened. But, you will not change the consistency of the skin, allowing lesions and ulceration to continue to occur.
Is there any special care for a child with a broken bone or sprain with a vascular malformation diagnosis?
- Yes. You need to have a pediatric orthopedist who understands how this is related to and can affect a vascular anomaly. It will depend on where the anomaly is located, how close it is to the fracture, the extent of the anomaly.
What precautions, if any, should we take with CMTC kids and chickenpox?
- No extra precautions. But, remember how the consistency of the skin is different than that of normal skin. Possible extended time to heal if excessive scratching leads to damage to the skin.
What is the best sunscreen to use?
- SPF of 30 or above. Blocks both UVA and UVB rays.
- In children use zincoxide or titanium dioxide, this is truly large molecules sitting on top of the skin. There is no absorption while reflecting the rays. There is also no negative concerns of applying chemicals to your child’s skin.
- Reapply sunscreen every 1 to 2 hours depending on your activity, such as swimming.
- Sun protective clothing is also a good idea.
What are the risks of organs beneath the markings being affected?
- The diagnosis is key here. It is recommended for organs and tissues beneath markings to be scanned to assess.
- Markings on the head could warrant a MRI to assess the brain. Glaucoma screenings are important when markings are around the eyes.
- Markings on the trunk of the body, ultra sounds to assess kidneys, spleen, etc is important.
My child has lesions or sores on the vascular markings, what can be done about the pain?
- Pain can be the worst part, and the healing can be a long process. Most ulcerations are less painful if covered. Apply prescribed ointments, dressings, and wrap with Coban medical wrap (a non-invasive self adherent wrap).
- Good ulcer care is important.
- The best procedure is ultrasound mist therapy. This effective procedure is performed with an ultrasound machine to apply sterile water to clean the would, and is not painful. This can be hard to find a facility that performs this, but it is growing in numbers available.
As an adult I have had no success with ointments or creams, what can I do for wound care on painful wounds that do not want to heal?
- You need a diligent doctor and wound care plan.
- The ultrasound mist therapy, where sterile water is used to clean the wound by means of an ultrasound machine, may be your next step.
Is it possible for the skin to be sensitive to touch or have clothing touching it? Is this a complication, or something unrelated?
- This is not necessarily related to CMTC. This depends on the sensory nerves in the location of the sensitivity. A pain team can be useful in addressing this.
Are capillary malformations strictly in the epidermis?
- We have capillaries elsewhere in our bodies. When we speak of CMTC, we are typically referring to those present in the skin.
- But, it can mean there are deeper vessel malformations, where a vein may be malformed underneath a capillary malformation.
Can CMTC and GNA11 be cross diagnosed? What’s the difference?
- GNA11 refer to hemangiomas, 10% of newborns have hemangiomas. It is not likely a patient would be “crossed diagnosed,” but possible for one to be ruled out and the other diagnosis take it’s place. Or, possibly a secondary diagnosis.
Are nose bleeds common or more dangerous with CMTC?
- If the markings are located on the face, nose bleeds could be more common and of concern.
Are blood clots a risk in CMTC, or are they more common with KTS and other vascular malformations?
- Please keep in mind, if the situation is right, anyone can be at risk for blood clots.
- Anytime you have a venous malformation, an individual is at risk for clotting. Abnormal vasculature that hinders blood from flowing correctly, creating stasis, the risk of clotting is present.
- This can depend on many factors, and not every CMTC patient is at risk.
My child tends to be in pain after long car rides. Is this related to CMTC, and if so, what should we do to help her?
- Any position that creates pooling of blood will create discomfort. On long car rides for instance, take the time to stop and walk around.
- Or if an infant, take the time to play with them where they can kick their legs creating movement.
- The contractions of muscles is what assists the blood to move forward, decreasing discomfort.
When vascular malformations are present on the legs, is my child at risk when playing sports? Should we avoid aggressive/contact sports like soccer?
- Discuss with your doctor what the risks would be in regards to the location of the markings. In cases of extensive markings on the legs or excessive hemihypertrophy, perhaps swimming would be better than soccer. Don’t hold your child from activities, but direct them to ones better suited for their diagnosis.
My daughter’s dermatologist wants to refer us to an interventional radiologist, why, what do they do?
- These doctors pursue more detailed views of an individuals vasculature, leading to more appropriate testing, assist in identifying accurate diagnoses.
- Being interventional, they are the ones performing the actual imaging providing extensive information for your VAC team.
- If sclerosing of a vein is to occur, they are the doctors who would perform this procedure.
Should patients with VMs have physical therapy on a joint with hemarthrosis?
- CMTC is not a diagnosis where doctors would typically worry about this. However, it is possible, and is not a typical malformation. This is a huge issue.
- MRI is highly useful to be sure of exactly where vessels are located, and treatment is crucial to avoid continued bleeding into the joint.
Is there any correlation between anemia and CMTC?
- There is no evidence of this.
Our doctors do not see the importance of referring us to specialists. What do I do?
- You do not require a referral to see a specialist. Yes, often insurance companies require them. However, most facilities do not require them. Some doctors say they need one, because they can bill at a higher rate. But in many cases, you can make that appointment with a specialist yourself! Be a strong advocate and give it a try.
With a CMTC diagnosis, is it possible for it to cause nerve damage? And would it be important to see a neurologist if a child has numbness in her arms and/or legs?
- In this context, the term nerve damage is rather broad. The best way to phrase this, is that there could be nerve changes. Paresthesia is associated with multiple diagnoses, and a consult with a neurologist would be important.