Posted 2014-04-09T01:54:05Z

April 8, 2014: Still figuring things out

Edward's Health
Well, I know we said Edward would be having an IVIg infusion on the 7th (yesterday), but about a week ago we realized his symptoms were getting worse, so we ended up going in last Wednesday (April 2) instead, which happened to be the day Edward turned 18 months old. I meant to post an update then, but I truly haven't had time. The whole process took all day, although the actual infusion was only about five hours. Edward didn't have any bad reactions to the IVIg, which is about what we expected, especially since this dose was much lower than the first time. Unfortunately, we aren't really seeing any good reactions so far, either. In fact, his symptoms continued to worsen through Sabbath. On Sunday, Monday, and today he seems to have plateaued. He can still sit up, but his tremors are much worse, and he sometimes falls when he's crawling. He's able to pull himself to a standing position, but does so only rarely and with great difficulty, and once he's up he's too shaky to cruise. He hasn't been trying to walk at all.

There are some bright spots. Though his symptoms are not improving, it appears that he is continuing to develop mentally, and even physically in some ways. He has said "Mama" and "tickle" intentionally in the last couple weeks, seems to almost be saying "night-night" and "Dear Jesus," and can sign "please" and "more," and seems very proud of himself when he does so. His appetite is good. He's growing four molars. He gets frustrated when Henry gets to go outside or do something that Edward can't do with him. Today he played well by himself for short periods, as long as I stayed very close, but he mostly wants to be held, so I end up with him in the baby carrier on my back a lot of the time.

Our State of Mind
I'm incredibly frustrated with the lack of information about Opsoclonus Myoclonus Syndrome (OMS). When I'm having a parenting problem--medical or otherwise--I'm used to having resources to read and study. Usually there are a lot of experts in whatever problem I'm having, multiple books to read, and another hundred "mommy blogs" out there from which to glean practical information through the experiences of others.

With OMS, there's this one doctor in Illinois with a very visually-unappealing, unprofessional, confusing website with links to a lot of un-footnoted, incomplete, and terrifying information. There's one article in Pediatrics from 2011, and one personal blog that hasn't been updated in over a year and that's really just a fundraising site for OMS research at Boston Children's Hospital--a worthy cause, to be sure, but not very helpful as a resource for figuring out what we're up against. There are a few studies here and there, many of them originating from the same source. There are no cures, no consistent reactions to treatment, no good news in general. The more I read, the more I'm forced to understand that Edward is very unlikely to get through this unscathed--he could end up with ataxia (imbalance), inability or reduced ability to speak and write, behavior problems, inability or reduced ability to understand language or read, tremulousness, opsoclonus (crazy eyes), obsessions/compulsions, drooling, attention deficit, lowered IQ, learning disability, and the list goes on. The most comprehensive recent article I have found (2011) shows that about 2/3 of patients in the study had some long-term impairment, while 1/3 had a normal intellectual outcome. Because of the severity of Edward's initial onset of symptoms, he is less likely to have the happy outcome.

Edward shows no decline in cognition, and appears to be developing age-appropriately, but the above-mentioned stats show that he is more than 50% likely to develop learning disabilities and/or other mental and emotional disabilities over time. For this reason, we feel a real sense of urgency to get his treatment right as soon as possible.

We're giving Edward until tomorrow (a full week after his infusion) to show improvement, and then we'll call the doctors back and see if we need to change directions. He may need the original dose of IVIg (twice as much as he just got last Wednesday), or perhaps they can give the IVIg much more frequently. We want to avoid steroids, at least in large doses over extended periods of time, as they can have all kinds of dangerous effects, too, especially on young children. Of course, we want to do whatever is in Edward's best interest, and are therefore open to any treatment that fits the bill.

I should mention here that we are incredibly grateful for our oncologists. I imagine that for some doctors it is tempting to lose interest in a case after the initial diagnosis is made and the "interesting" part is over. Happily, we are blessed with doctors who enjoy problem-solving and are willing and even eager to work with us to change the course of Edward's treatment quickly if needed.

We are still going to continue working with our wonderful doctors, but we are also very willing to try home/natural remedies. I've already started doing the most basic of hydrotherapy--finishing Edward's warm nighttime bath with a cold rinse. I know that many of you who are reading this know a lot more than I do in those areas, and we would welcome your suggestions. Also, if anyone out there has ever treated OMS or met anyone who has had it, we'd love to talk to you. ([email protected])

I don't mean to be overly negative. We do very much believe that God is still in charge, and that whatever happens in all this, we want Him to be glorified. We're praying for guidance and peace, and we ask for your prayers in those areas, too.

We are so grateful for your food, gifts, cards, messages, and for continuing to lift our family in prayer. Thank you!

- - - - - - - - - - - - - - - - - - - - -

Edward's Story: The Nutshell Version
It has come to our attention that some people are confused about what's actually going on with Edward, and we thought this would be a good place to put a quick version of our situation...

In February 2014, Edward exhibited strange neurological symptoms, which led to a diagnosis of neuroblastoma (cancer) on the nerves in his left shoulder. Most of his tumor was removed in early March, and the rest of it will probably resolve on its own (ie, the cancer is no longer a problem). The most difficult part of Edward's illness has been and continues to be his neurological symptoms (caused by his own body attacking his brain with the antibodies it created to attack his cancer), known as Opsoclonus Myoclonus Syndrome (OMS). He has been somewhat responsive to steroid and IVIg (intravenous immunoglobulin) treatment, but he is still very shaky, has strange eye movements, no longer walks, has difficulties sleeping, and is irritable. OMS is extraordinarily rare, has no known cure, no FDA-approved treatments, and almost no research dedicated to it. About 2/3 of OMS patients have long-term challenges in either motor skills or cognitive abilities.

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted

Emilie DeVasher 31 Comments

Previous Update

Next Update

Edward DeVasher

April 8, 2014: Still figuring things out

Comments (31)