Back to School and NF Kids

With the new school year well underway, many kids are excited to go back. At the same time, some NF kids may face some social and behavioral issues. Let's revisit our interview with the University of Wisconsin-Milwaukee Psychology Department's Kelly Janke, M.S., to learn more about learning issues and NF children.

1. Discuss some of the learning issues that you have seen with NF children in school.

Children with NF-1 are more likely to have learning difficulties than their siblings or same-age classmates who do not have NF-1. The rates of learning disabilities range from 30%-65%. Difficulties have been seen in all academic areas including word decoding (sounding out words), reading comprehension, math calculation, math problem solving, and spelling. We really see a lot of variability in the learning profiles of children with NF1.

2. I understand you’re doing a study on NF kids and their siblings, could you discuss that a bit further?

For our study, we recruit children with NF-1 and their siblings between the ages of three and six, and plan to follow them annually up until the age of 10 if possible. The goal of the study is to examine the cognitive and behavioral characteristics of NF-1 in young children to determine if we can see early signs of learning and attention problems. We are also hoping to learn more about the development of cognitive skills over time, and determine if this development differs from their siblings or other typically developing children.

3. What are some of the preliminary results you are finding?

We have found that learning and attention problems can in fact be identified in the preschool age range. There is no clear pattern to these difficulties. For example, some children have difficulty with verbal tasks (e.g., naming pictures, following directions), but do well on spatial tasks such as building with blocks. For other children, the opposite pattern is seen. Regardless of the pattern, most children with NF-1 have some difficulty in at least one area, although it may be mild. It is important that these difficulties can be identified at this young age because that allows interventions to be put in place earlier and prevents more pronounced learning and attention problems. 

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Little Launches a New Website

There is a lot of new stuff happening at the Littlest Tumor Foundation! We are going to be re-launching our website in August. In order to celebrate, we would like to invite everyone to submit a launch picture of their own. Send us a picture or post it on our event page on Facebook and the day that we launch we will pick a winner. The best launch will win. We would love for everyone to participate! So get creative, have fun and show us how you launch!

Green Juice, Dharma Talks & California Beaches

This summer our family took a different approach to NF. The 6 months prior to the summer vacation were filled with PET scans, MRIs, surgery, pathology reports and needless to say STRESS. Stress on our NF child and his two siblings aged 5 & 9. So we rearranged some doctor appointments and took off for a month for CA beaches, Dharma talks and ultimately green juices. Packed tightly in the car we drove from the midwest to CA-- hitting Colorado mountain air with alpine slides and rock walls, Utah red rock hikes, and then SOCA beaches and the best thing cousins! We then headed to a family retreat at a Monastery in Escondido CA. There are no electronics, all vegan food, and some silence. This is a place where children blossom and parents get to connect ( I believe every parent on some level believes they are messing up). You get to listen to monks and nuns talk about the practice of compassion. Children sing, craft, nature hike and learn too about compassion. Panels of lay persons round out the dharma talks. You eat, clean and share with other families. We always leave with knowledge, calm and better prepared. In my case better prepared for the upcoming MRI. Tumors and MRIs tend to throw me into what feels like a tidal wave of worry that feels so gripping it is hard to breath. So I hope with my pack of dharma knowledge I will breath through the next one. Upon return to the Midwest I had a consult with none other than the ultimate positive healing junkie Kris Carr. I had to fess up our diet for a week. This was after a weekend in WI Dells land of hotdogs and french fries. We had a long discussion on tumor growth and nutritional therapies. She herself has stopped Stage 4 cancer from progressing for the past 7 years through a highly alkaline diet. She and a slew of others advocate upping alkaline foods to slow tumor growth and diminish inflammation. Stress being a big part of inflammation she too spoke of meditation as our monks in CA. So now I just need to put it all into practice this idea of creating balance while living with NF. MRI in two days small tidal wave-- a start. Oh and we drink our green juices (some of the time).