UGH……that is the only word I can say to sum up this week with Hannah. It has been a horrific week to say the least. The mood swings of sadness/depression to rage/anger is enough to put you over the edge and the fact that there is no trigger that we know of is frustrating to say the least. Let’s not even begin to talk about all the self-stim behavior that includes pulling her hair out at the roots (literally) among many other things. The OCD is worse than ever and the anxiety…..well, let’s just say she is anxious about everything and has zero peace in her little heart and mind. How can a 10 1/2-year-old be that anxious? It is heart wrenching for Dennis and me because we can’t fix it. Also, and this could be the worst part is her insomnia has returned. She dealt with horrible insomnia early into this disease and we found out one of the main causes was low ferritin levels and severe anemia; so we are thinking that could be happening again but we need to have her ferritin checked to see. I don’t know if you have ever dealt with insomnia but as an adult it is awful; I cannot imagine what it is like for a child, especially one with Down Syndrome who can’t understand why she cannot fall to sleep or stay asleep. If you saw the amounts of medications we give her at night you would think she would pass out within 10 minutes of taking them (normally she does), but this week……it has been awful. Took her 3 hours last night before she fell asleep and she was up about 6 times throughout the night after that. UGH! Of course, no sleep at night means a grumpier than usual Hannah during the day.
Hannah has so much going on in her little body and brain, things we don’t understand; heck, things her doctors don’t even understand. There are things that are coming up as far as testing that is unfair for her but things that need to be done. We have several doctors appointments in the next 2 weeks and some of the testing that has returned already has us somewhat concerned. She will be having a test done on her adrenal glands to see if we can “wake them up” as all the steroids she was on for so long caused them to stop functioning. The question is whether or not it is just adrenal fatigue or failure? That is what the test will hopefully show. Also, she has a lot more blood work coming up to do, some testing the the Neurologist in Birmingham wants done that has never been checked having to do with autoimmune diseases and diseases of the brain. Also, and this is the one that rips my heart out is a spinal tap. I have personally had one, years ago and they aren’t pleasant. Fortunately for Hannah, she will be under anesthesia but that brings a whole new list of concerns due to her heart. You can’t win for losing! We are praying that these new tests will shed some light on some things we have suspected for nearly 3 years now (outside of the PANDAS diagnosis). Things I am not ready to talk about but concerns her Pediatrician, Geneticist and Dennis and I have had. Fortunately, we found a Neurologist willing to listen and run some tests that the other Neurologists weren’t willing to do. So, for that we are grateful. At this point, we just want answers (if they are to be had), so we can work on keeping Hannah comfortable and give her some sort of life!
I will admit, Dennis and I are struggling with all Hannah has going on. I know life isn’t fair but I think Hannah has had more than her share of struggle and challenges and we are just ready for answers. If we could get to the root of the problem then either we can fix it or at least get Hannah the right medications/treatment to help her feel better. I don’t think Hannah has ever felt GOOD. I don’t think she knows what feeling good is. You know when you are sick and you feel like you have been hit by a MAC truck? Do you ever think….”wow, I never know how good I usually feel until I get sick.” Well, I don’t think Hannah knows what it feels like to feel good. She has nothing to compare it to because she always feels like crap. I just want her to feel good, even if it means medications to get her that way. Yes, I know…..medications are just band-aids to mask a problem, but when you haven’t been able to get to the root of the problem (and in all reality some problems you never get to the bottom of), then you take any and all the help you can get in the form of medications. Our house already looks like a pharmacy and I am afraid, after the results we get, we will most likely be adding more medications to Hannah’s daily list. But, I have gotten to the point that we have to treat her symptoms as it is the only way to give her (and us) some relief. I have tried essential oils, shakes full of nutrients, vitamins, coconut milk and oil, turmeric, gluten and casein free diets…..over the past 3 years we have tried EVERYTHING imaginable and NOTHING has worked……we just need answers to figure out what WILL work and how to make her comfortable.
So, your prayers for Hannah the next few weeks are greatly appreciated. We are praying for answers with these tests…..good or bad, we just want answers. We will deal with any possible bad news if that happens but right now answers are what we need and want. Thank you for following our journey and for praying with us and for us……
Until next time……….