My 17 year old daughter with scls is being followed by a pediatrician right now since she will be 18 this year she will need to be followed by an adult doctor. Her pediatrician is not sure where to send her. My question is who does everyone have as a specialist? Thank you in advance 

Hi Jasperdina,

My husband is seeing a hematologist who is also an oncologist.

He has been very helpful developing my husband's medical alert that he wears on a dogtag at all times when he leaves home.

The doctor is also monitoring his mgus levels since this places him at higher risk for some cancers.

He and his staff are also very proficient at getting insurance approval for ivig treatments which our insurance requires every 6 months.

Hope this helps!

My recommendation is that you transition her to an experienced internal-medicine physician who will oversee her care and provide referrals to hematologists, immunologists, gynecologists or other specialists as circumstances warrant.  Hematologists tend to be interested mostly in treating patients with blood cancers, and like all specialists, they tend to be rather narrowly focused.

If you live in or near a major city, like Toronto, Ottawa, Kingston or London, then choose an internal-medicine physician who is affiliated with a university's medical school -- there are six in the province.  If you don't, ask her pediatrician which internal-medicine physician he/she recommends.  Pediatricians see their patients grow up and graduate all the time, so they are used to making such referrals.

The reasons why physicians affiliated with a university's medical school are the best is because they (a) tend to do research and not just clinical work, so they are intellectually more curious and open-minded; (b) tend to have wider networks of high-quality colleagues they can refer patients to; and (c) will be able to visit your daughter in the hospital, and help manage her care, should anything bad ever happen.

For example, if you live near London, you would go to the page listing the faculty of the General Internal Medicine Division at the Schulich School of Medicine, https://www.schulich.uwo.ca/gim/people/faculty.html, and try one or two who seem most appropriate (or least inappropiate) given their declared specializations. 

Thank you for your responses, this is great advise.