Hemihypertrophy/Hemihyperplasia

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Treatment Plans

Recommended Doctors and Testing Protocol

**Doctors are recommended for an initial evaluation upon diagnosis of Hemihypertrophy. Every case is different and some cases may require more doctors than others.

Geneticist - To give a definitive diagnosis, order tests, and follow-up

Orthopedist - To follow bone growth and development

Neurosurgeon - To check for brain involvement

Cardiologist - To check for heart involvement

Nephrologist/Urologist - To follow Kidney's if abnormalities show on ultrasound

Gastroenterologist - If ultrasound shows abnormalities on liver.

Ophthalmologist: Same chromosome that can be affected by Hemi also controls the growth of the eyes.

Audiologist: Same chromosome that can be affected by Hemi also controls the ears.

Testing Protocol
Abdominal Ultrasound: An abdominal ultrasound examination should be performed every three months until 8 years of age. Until 4 years of age, the ultrasound should include views of the liver, kidneys and other internal organs. Because the risk for hepatoblastoma drops markedly after this age, the remaining ultrasounds can focus specifically on the kidneys.

Measurement of blood alpha-fetoprotein (AFP) concentration: A blood test to measure serum AFP should be performed every six weeks until 4 years of age. AFP is released by hepatoblastoma tumors and can be a highly sensitive way to detect these cancers. Because AFP levels are normally high during the newborn period, measurements should be performed regularly and reviewed by an experienced pediatrician or pediatric oncologist

Predicted AFP Levels
Predicted AFP values in children with BWS to age 3 years Age(mo) Predicted AFP in BWS (mug/L) (95% CI) Mean AFP (± SD) in healthy children[10]

Age (mo) Kids w/o BWS Kids w/BWS
1 n/a 2046 (303-13838)
2 323 (+/-278) 525 (78-3547)
3 88 (+/-87) 239 (35-1613)
4 74 (+/-56) 139 (21-939)
5 46.5 (+/-19) 90 (13-608)
6 12.5 (+/-9.8) 64 (9-431)
8 8.5 (+/-5.5) 37 (5-250)
10 nr 24 (4-163)
12 nr 17 (3-115)
24 nr 5 (0.7-30)
36 nr 2 (0.3-14)
 

Treatment Plans

We have no medical background, just personal experiences that we can share with you

 

Doctors We Have Used

Predicted AFP Levels
 

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