Well its official my daughter-granddaughter had the worst week in history last week. her dog died. Rocky had been with her through the loss of both her parents, moving in with old people 1000 miles from home and so forth.
The pediatric Rheumatologist from Seattle Childrens was here. The Final Verdict is Psoriatic Arthritis. although her inflammation markers are high and such. Roughly for those of you who keep track of things like this as she and are are not biologically related are 1 in about 1 million....................
Anyway she is on a 10 day Taper trying to find at what point the predi quits working to determine her NSAID. and we will decide on the Bio and or DMARD on the third. So after a hectic week multiple appointments MRI's X-rays mourning and another family crises much worse in potential we are in wait mode......
However don't mistake that for quiet watching and waiting oh no don't do that. Nothing like a spectrum/special needs child on steroids..........................
Oh, my on the teen/ spectrum / steroids combo. Wishing you lots of patience as you deal with this official diagnosis and everything else you have on your plate.
I’m sorry to hear this, and I am just imagining her on the prednisone. What fun! At least your daughter and granddaughter have someone knowledgeable around.
How old is this girl? Old enough to understand what she has, and to participate in her treatment? Sounds like the old dog has been the one stable thing during all her upheaval- such a loss, just as this new crisis starts. Never a quiet day at your house, is there?
Tana is 15 going on 5. She understands clearly what she as has she is very tuned to her body thankful she has an answer and thrilled she was right about really having pain ( not growing pains) and really pissed that I haven't fixed it yet. She is a bit PO'd however as there have been some changes to her "currency program". Its seems there has been some inflation in Turah Montana and the price of of screen time and snacks have exploded. Her earning potential has gone up with a daily exercise and journaling program. meds of course have been an "or else" situation and non negotiable. As a five year old should be able to shoot themselves we will be starting practice with saline soon. We won't be using autoinjectors as the potential to flinch is too high. (she is doing well with oranges) We are having a bit of a problem keeping up her daily med/pain/exercise log, but that will smooth out but I'll be damned if I can sync it between her tab, phone and my tab. I have a tech guy working on it, I can't believe the issue hasn't come up before. I'm having a bit of a problem with the school. Not that they don't want to help but as she is on an IEP, putting a more flexible 501 plan in place along with it is tough. I want her monitoring her own meds the school does not. This week running is out, but maybe not next week. Tana of course wants to be the decider and there is only room for one decider............
Its tough because she has the innocence of a five year old, the body of a super model (seriously) zero Executive functioning, and impulsiveness of a teenager (and the mouth)
Louise said:
How old is this girl? Old enough to understand what she has, and to participate in her treatment? Sounds like the old dog has been the one stable thing during all her upheaval- such a loss, just as this new crisis starts. Never a quiet day at your house, is there?
You know what,I can’t think of anyone better to have as her guiding hand than you Lamb. I’m sure you will both do fine but good luck anyway with what lies ahead.
Oh, boy. I am a firm believer in the old adage, “When it rains, it pours.” That being said, I am sure that you are more than capable of managing all of this. When things are a little more settled, and the steroids are over (phew!) look into any respite services available. You are definitely at risk for caregiver role strain (if you aren’t already there) and need to remember to take care of you and your well being too.
As always, you have my ear, if you ever need one to bend.
Its tough because she has the innocence of a five year old, the body of a super model (seriously) zero Executive functioning, and impulsiveness of a teenager (and the mouth)
Wow, that's a rough combination. She's lucky to have you in her life, and I hope there are other adults who also have her back. I understand about her being glad to have an answer- went through that with a child whose biggest fear was that the doctor wouldn't have answers for him. No answers = no help. Hard for adults to deal with, worse for kids.
If you're hitting the one-in-a-million odds this week, time to go stock up on lottery tickets!
Well yesterday was the day. We had our "med meeting" I'm thinking I had Tana over prepared......... As I mention bedore she has the mental age of a five year old. she started off thanking "melody" (her doc) for the cool coloring sheets. it was the usual mark where you hurt sheet, She colored the whole sheet and did mark where she hurt.
She explained nicley how the taper worked or mostly didn't - She got up easier and got yelled at less about going to miss the bus and didn't loses her phone once for missing an alarm. We have an old tab that has times programmed in for getting showered, dressed teeth brushed etc if she misses one she loses her phone, if she misses the buss she loses her screen time)
The doc decided to skip the NSAIDs and start with MTX. Tana asked her if that was "aggresive enough" because she didn't want to be like her grandpa or his computer friends, (I'm choking the laughter at this point) The doc assured her it was but that she had other guns if that didn't work. Tana informed her she didn't want shot if she was too sick, but maybe get put to sleep like her dog but only when she was old.
Then the MTX disscusion started..... The doc started out with we will start with six pills. Tana informed her she didn't want pills, she already takes too many. AND pills make you sick, she wants the shots. The doc told her that was correct but usually she starts with the pills and if they make the person sick then she does the shots. Tana asked her why those people would take the chance of getting sick if they didn't have to?
Next the doc asks whos going to give her the shots. Tana informed the doc she would be giving herself the shots because her grandpa told her that she had to take responsibility taking care of her own disease. The doc told her how brave she was blah blah and Tana informed her she wasn't brave, she was really scared, but her grandpa told her she didn't have any choice, either she fought the disease or "her butt would get kicked by the disease" and she probably couldn't do the Special Olympics any more.
So we injected oranges last night. (only wish we had vodka to do it with) Friday night is the real deal. As you may know anxiety is part and parcel with spectrum and intellectual disability as Tana climbed in the bus this morning she was muttering leg or tummy, leg or tummy. I'm glad I'm not the school nurse I suspect she will be getting a client today.
Lamb, I could just see this unfolding before my eyes. I’m so very sorry this has happened to Tana, but again, how wonderful that she has a Grandpa like you and a Rheumie like Melody.
"The doc told her that was correct but usually she starts with the pills and if they make the person sick then she does the shots. Tana asked her why those people would take the chance of getting sick if they didn't have to?"
Sounds like a pretty together kid to me! Sometimes the intellect of a five-year-old works out pretty well.
Sybil, I spent one summer volunteering in a school for what were the called the profoundly retarded- kids who would never get past the level of a three-year-old, if that. As impaired as they were on so many levels, they could also be remarkably sophisticated, especially in their interactions with staff, and their ability get what they wanted and needed. We all have strengths and weaknesses, but isn't it fascinating to work with people who have such huge differences?