[…] asymmetric, disproportionate, and less progressive Overgrowth features mostly present at 6-18 months of life and become severe with advancing age Capillary hemangioma or port-wine stain presents at birth, during early infancy, or childhood. [ncbi.nlm.nih.gov]

The regional overgrowth with predominant soft tissue component is already present at birth and most often affects the feet. [compva.com]

These symptoms are always present at birth, but might not be noticeable right away. [texaschildrens.org]

Kristen Davis presents a copy of “Four Leaf Clovers”, a book about living with a rare disease, to PROS advocate Wilma Westenberg. [chanzuckerberg.com]

• Feeding Difficulties

  Many children have feeding difficulties that are often multifactorial in nature. [ncbi.nlm.nih.gov]

• Splenomegaly

  Splenomegaly MedGen UID: 52469 •Concept ID: C0038002 • Finding Abnormal increased size of the spleen. [ncbi.nlm.nih.gov]

  […] first and second toes Wide space between 1st, 2nd toes Wide space between first and second toes Wide-spaced big toe Widely spaced 1st-2nd toes Widely spaced first and second toes Widened gap 1st-2nd toes Widened gap first and second toe [ more ] 0001852 Splenomegaly [rarediseases.info.nih.gov]

• Hypoketotic Hypoglycemia

  Endocrine issues affect a small number of individuals and most commonly include hypoglycemia (largely hypoinsulinemic hypoketotic hypoglycemia), hypothyroidism, and growth hormone deficiency. [ncbi.nlm.nih.gov]

The doctor will put together a treatment plan for your child. Related articles PIK3CA-related segmental overgrowth [texaschildrens.org]

We present the case of a patient with CLOVES syndrome who was started on compassionate treatment with alpelisib after surgical debulking of a cystic lymphangioma and treatment with sirolimus. [pubmed.ncbi.nlm.nih.gov]

What are the treatment options for CLOVES syndrome? There is no cure for CLOVES syndrome, but experienced vascular anomaly specialists can manage or prevent symptoms with the right medical and surgical care. [childrenshospital.org]

treatment to specifically address the root cause of PROS conditions in select patients 2 years of age and older1. [clovessyndrome.org]

You may also want to contact a university or tertiary medical center in your area, because these centers tend to see more complex cases and have the latest technology and treatments. [rarediseases.info.nih.gov]

PMID: 20537357 Prognosis Yan W, Zhang B, Wang H, Mo R, Jiang X, Qin W, Ma L, Lin Z Hereditas 2021 Jun 1;158(1):18. doi: 10.1186/s41065-021-00184-y. [ncbi.nlm.nih.gov]

[…] malformation Abnormality of the musculoskeletal system Cranial hyperostosis Scoliosis Abnormality of the nervous system Spinal dysraphism Tethered cord Growth abnormality Hemihypertrophy Lower limb asymmetry Overgrowth Neoplasm Lipoma Nephroblastoma Etiology [ncbi.nlm.nih.gov]

There is no cure for CLOVES syndrome, but experienced vascular anomaly specialists can manage or prevent symptoms with the right medical and surgical care. [childrenshospital.org]

French doctor Guillaume Canaud[1] published an article in Nature that demonstrate the efficacy of BYL719 (From cancer), an inhibitor of PIK3CA, in preventing and improving organ dysfunction. [en.wikipedia.org]

This promising drug significantly reduced the size of the lymphangioma and prevented progression of the tissue overgrowth in the gluteal region. [pubmed.ncbi.nlm.nih.gov]

This will also prevent cutaneous and visceral morbidities, neurological deficit, pain, breathing difficulties, and possible complications such as hemoptysis, gastrointestinal bleeding or obstruction, and pulmonary embolism arising from vascular anomalies [ncbi.nlm.nih.gov]