What to do When you have No More Options?

In Rettland, as coined by Colleen English, there are many times you run out of options. There just isn’t any more medicine and science can do. What do you do then???

Some parents are faced with the awful, horrible truth that truly nothing can be done and they have to make a decision let their child go or keep fighting with an inevitability end even then. Some opt for an option that will save their lives and put even more burden on themselves, and they do it, because, well what else can you do. Those are the heartbreaking choices; when options run out, some place their faith in God, some in if they can hang on  a bit longer, than a new option may present itself, some to both.

I am fortunate. I am facing a “what do you do when you have no more options” scenario, but it’s only about behavior/mood/aggression.

Aggression can be a tremendous consequence of Rett syndrome and it can be a lonely state as many parents are afraid to say how aggressive their children can be. Usually, it is the higher functioning girls that are aggressive. Katie wears a helmet almost non-stop inside buildings because she will head bang out of nowhere; she’s been known to put holes in walls with her head and helmet. And without medication, she can become extremely aggressive. My posts are often met with comment after comment of the same, similar pictures, scars, stories-like being in an abusive relationship but you simply cannot get out of it.

The medicinal combinations Katelin is on for mood control has caused her to gain a tremendous amount of weight. So much so, that now the real threat of diabetes is at hand. And so, it had to go. But, because Katelin is allergic to so many classes of medications, I’ve been told several times there is nothing else to try.

I have only one place to turn now and that’s to naturopathic options. They scare me. They’re not regulated, some come with possible side effects that seem fairly dire if you ask me. I reached out to the community and was given many responses,  but a few were mentioned several times. So, began the search. What would be the best solution for Katie. Many things I would try were combined with things I had crossed off my list, so I’m left with buying individual options and hoping. This is not an inexpensive undertaking and in the meantime her behavior flows.

But, in all honesty, I’ll take this “What to do when you run out of options” to the many heart-wrenching ones made every day  by so many parents. But, in the end, we are running out of options, in so many ways that affect our children daily.

Please, World, hurry up and save them.

This entry was posted in cure, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide. Bookmark the permalink.

One Response to What to do When you have No More Options?

  1. Rose & Renee says:

    It seems that we all reach these dire circumstances in rettland at some point, sometimes often.

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