4 Month Appointment

Lincoln had his 4 month appointment today ... and Schuyler insisted she go ... she said it was to be there for Lincoln ... I think it was for the stickers ... but needless to say it was so cute how she kept telling him she loved him and that it would be OK ...

He weighs 17 pounds which is the 90th percentile and is 25.5 inches long which is the 75th percentile ... so he grew an inch since last month and gained a pound and a half ... measurements were good for his head and chest ... eyes responded well to light ... ears and mouth looked good ... he smiled and cooed the whole time ... had 2 shots and an oral vaccine and cried for only a second ... was just a total champ ...

Then I asked the doctor about some birth mark looking things that have sprung up on him in the last month or so ... there was one or maybe 2 at his last appointment but I didn't think anything about them ... but now there are 5 possibly 6 so it made me wonder ...

Our always easy-going doctor started checking him out everywhere and counting the spots ... called them cafe au lait spots ... he said having more than 3 is a sign of von Recklinghausen disease or as it is more commonly known now as Neurofibromatosis.

Neurofibromatosis is a genetic disorder of the nervous system that causes benign tumors to form on the nerves anywhere in the body at any time. At least eight varieties of NF exist and can range from very mild to quite sever. Having one to three café-au-lait spots is quite common, present in as many as one in five healthy children. Each spot of significant size after the first three, though, is increasingly uncommon and increasingly likely to be associated with NF or with one of the other neurocutaneous syndromes, including neurofibromatosis type 2, segmental neurofibromatosis, tuberous sclerosis, McCune Albright syndrome, Fanconi anemia, Bloom syndrome and ataxia telangiectasi. Many of these findings do not show up in early childhood. Thus, any child with six or more café-au-lait spots that are more than 5 mm in diameter should be monitored and treated as having NF. This means a baseline examination by an ophthalmologist and audiologist (including vision and hearing tests) and a visit with a geneticist. It also means considering a baseline EEG and head CT or MRI, as well as a skeletal survey radiograph. Each parent should have these same tests performed on him or her; siblings may be evaluated as well. NF is often so mild that a parent isn't diagnosed until café-au-lait spots are found on his or her child. Often, a child's course of disease follows that of his or her parents. Those with a presumptive diagnosis of NF need annual vision and hearing testing, as well as an annual neurologic and skeletal exam (in addition to a regular physical). Children with NF1 should have their growth followed on a special growth chart. They should be monitored for high blood pressure. Over the course of a lifetime, patients with NF1 need to be closely followed because of the higher risk of several rare types of cancers.

So he had me document the spots ... took photos of them all tonight ... need to do it again this weekend in the daylight ... made notes of them and said we are going to have to keep an eye on them ... I hated reading the "one in five" up above ... that is what I was told last time there was bad news on the horizon and it turned out we were the one ...

So I am trying not to freak out about it right now ... keep an eye on it ... see what happens just like the doctor said ... but at the same time be diligent so if there is a problem we are ready ...