Hi Nerdiya
How sad that your little boy is suffering too! But it does not have to be as bad for him as it was for you. There is a lot more information available now. You will need to get his - and your!! - blood tested for
- iron
- TIBC (total iron binding capacity)
- transferrin saturation (or saturation index)
- ferritin
Most standard iron panels don't include ferritin, so you will have to ask your doctor for that specifically. You will also need to get the actual results - the numbers - not just words saying "normal" or "above normal".
WED/RLS is a disease of brain iron deficiency. Each organ in our bodies needs a different amount of iron. Labs measure the iron in our blood, but that doesn't tell us if we have low iron in our brain or liver. In fact, a lot of doctors aren't even aware that brain iron is not reflected by the amount of iron in our blood. We can have lots of iron in our blood, and still be deficient in our brains.
If ferritin is below 100 ng/ml in adults or 50 in children, that is a fairly good indication that we're deficient in iron somewhere in our body. For someone with WED/RLS, it will be our brain. The number one treatment for WED/RLS in children is iron supplementation.
If your doctor doesn't know how to interpret the results for a WED/RLS patient (most don't!), then you might have to ask for help somewhere else. There are some wonderful physicians who help people like us, one in particular is Dr. Mark Buchfuhrer, one of the foremost clinical specialists in WED/RLS treatment. He has been answering people's questions via email for years. His email is
somno@verizon.net. He could let you know if your son - and yourself - should be taking oral iron supplements, or even trying for IV infusions.
To ensure your son has as good a life as possible, and to help yourself too, you need to continue learning everything you can about WED/RLS. You will have to train your doctors. Most doctors are willing to learn if you approach them the right way. Show them medical papers - click my signature link and scroll to "The RLS Foundation's brochures" where I talk of the 2021 RLS Medical Bulletin: A Publication for Healthcare Providers. It tells you how to get a copy. It is fairly easy to read, and is even a good one to give to your doctor. There is a section at the end on WED/RLS in children, but you should read it all if you can, and especially the section on Iron Therapy.
I have links to other papers that you can download for free. Try "The 2018 International RLS Study Group consensus guidelines on IRON TREATMENT for WED/RLS". This is in medical language but you can read parts of it yourself if you want. You can also take it to your doctor and ask him/her to please read it.
Keep in touch and best of luck.
