What’s On Your Mind?

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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.  

• 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.

• 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. 

There is no evidence of this. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• If the markings are located on the face, nose bleeds could be more common and of concern. 

• 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.

• 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. 

• 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. 

• 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. 

• 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. 

• 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.  

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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. 

• 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.

• During times of stress your body releases hormones as a response. Endorphins will cause blood vessels to vasodilate or vasoconstrict.