Anthony was born May 25th,1999, and he was a big baby at birth, almost 10 pounds. Just full of fat and sooo healthy, such a doll. Isn't he gorgeous?
At the age of about one and half weeks to 2 weeks, we noticed light brown spots appearing on his skin, especially on the back and tummy. We knew Anthonys daddy has Neurofibromatosis, but we didn't know anything really about the disease, or how serious it can be.
Anthonys Dr acted like NF is really no big deal, he gave Anthonys mommy a pamphlet to read, saying... "dont let this scare you" this is a worse case senerio.
Anthony is very tiny, however this never really worried us because his mom is only 5 foot and his daddy is 5'2". But then I did some research on the web and saw this can cause growth problems. So we figured..OK... he will be small..we can live with that..right??
He began getting lumps (which we knew was also from his NF) and the Dr continued to inform my daugheter this is really no big deal. His dad,also had alot of these lumps, to which he had told my daughter, had to be removed, only if they were on his spine.. His dad left long before Anthony was born, so we had NO way of contacting him on this disease.
Anyway...NOW..we are told by Anthonys Dr that 2 of these lumps could be cancer. We never dreamt in a million years that cancer is one of the side effects..after all... NF is NO BIG DEAL..right? WRONG!!!
He will finally be seeing a specialist in Iowa who deals with this disease, and now we find out, he should of been seeing a specialist all along.
This is the reason for this page! Few people know about NF.. And I want to make sure a better awareness is put out about Neurofibromatosis. This is NOT some disease to just let go. There are things medically that need to be done all the time, ie: eye exams..MRIS..Blood Pressure checks.. these should be done on a regular basis..
Below is some text I have found on a site for Health Supervison for Children with NF 1:
The complications of NF-1 result from direct involvement of multiple systems by neurofibromata, an increased risk for malignancy (mostly fibrosarcomas but also other malignancies, including leukemia), and poorly understood associations such as mental retardation, short stature, and neurologic and vascular changes unassociated with neurofibromata. Sarcomatous changes may occur in neurofibromata, characteristically in deep lesions. Pain, rapid growth, and new localizing neurologic findings sometimes suggest malignant changes, which are otherwise difficult to detect.
Among the unusual but more serious complications of which the family should be aware are optic gliomas (leading to blindness) and other brain and nerve tumors, hypertension, kyphosis and/or scoliosis (leading to diminished pulmonary function), gastrointestinal bleeding secondary to gastrointestinal neurofibromata, facial disfigurement from neurofibromata, and pseudarthroses. Death may result from some of these complications.
For unknown reasons, NF-1 is associated with an increased incidence of mental retardation, although it is usually not severe. Learning problems, speech retardation of a nonspecific nature, hyperactivity, seizures, and EEG changes are also commonly reported.[12,13] If seizures are present, intracranial tumors must be excluded, although often no specific etiology for the seizure disorder is found. Persons with NF-1 tend to show subtle neurologic abnormalities involving fine coordination, balance, and gait.
The multiorgan occurrence of neurofibromas and their complications often requires care from a variety of medical and surgical specialists. The pediatrician should coordinate such care. Patients with more than minimal manifestations of NF-1 may benefit from referral to a multidisciplinary neurofibromatosis (NF) clinic for primary or specialty care. Such clinics are a valuable consultation resource for pediatricians caring for patients with NF-1.
Treatment is aimed at the complications as they occur. Some of the problems, such as renal artery stenosis, if detected early, can be managed successfully. Enlarging tumors can sometimes be managed by observation and surgery. However,surgical removal of a neurofibroma compromising an essential organ system may not be possible because of an inaccessible site or infiltration into surrounding tissue. If malignancies (including leukemia) develop, treatment is the same as for children without NF-1
1. Evaluate the child for new neurofibromas and progression of lesions. Examine the skin carefully for signs of plexiform neurofibromas that may impinge on or infiltrate underlying structures.
2. Check the child's blood pressure. Because renal disease (particularly renal artery stenosis), aortic stenosis, pheochromocytomas (more common in adults) and adrenal tumors may occur, regular and careful blood pressure measurements are important. A variety of vascular hypertrophic lesions may be found.
3. Evaluate neurodevelopmental progress
4. Evaluate the child for skeletal changes. Look for scoliosis, vertebral angulation, and limb abnormalities. Sometimes localized hypertrophy of a leg, arm, or other part of the body results from plexiform neurofibromata.
5. If any complications occur or if neurocutaneous lesions appear to be rapidly advancing, refer to the appropriate specialist.
6. Recommend available resources for patients with NF-1 (eg, NF clinics, support groups, and individual NF-1 families). Supply books and pamphlets (obtainable from the National NF Foundation). The National NF Foundation can also provide further information and clinic locations. The address of this organization appears in the Acknowledgments section.
It is my hope and Prayer, that by making this page, it will help bring more awarness to this disease. So that no other parents of grandparents sit back in the dark and say...NO BIG deal!! Because..NF is a VERY BIG deal...
Last but certainly NOT least, please add our baby to your prayers, and also add all the people in the world who continue to fight this disease, that a cure may be found soon.
Here is a Table of Sites to visit.All of these sites were
found for me by a dear friend..They all pertain to NF1 and NF2.
Thanks so much Molly44!!
Please feel free to visit some of my other pages, as listed below.
I have my Tribute to fire fighters, my husband is a
retired/disabled firefighter now, Our In Memory of Kyrstin,
she is our little Angel who was not here but for 3 months
but watches over us daily, and my Background sets I have made so far.