Recently I took Boo for a follow-up with neurology. The best part of the visit was when Boo hit the ALARM button in the hospital elevator. In a crowded hospital elevator. The day would have to get better, yes? We were only going for a routine follow-up.
Maybe with other children. But nothing with Boo is as easy as it appears.
I adore her neurologist. I trust her more than any other physician Boo sees. We had a long talk about the autism diagnosis and what it means for Boo. She asked about Boo’s chronic low blood pressure and is surprised that no one is too concerned about it. She asked about Boo’s chronic color changes and again showed surprise that no one is too concerned. That although her Raynaud’s is manageable it is odd that it presents so young and without any rhyme or reason.
I told her about Boo’s newest development: intermittent swelling. That her wrists and hands would swell for no reason. I had taken her to the general pediatrician but by the time I had made it his office she was no longer swelling. As the neuro examined Boo she agreed that one of her hands appeared swollen and asked about her legs. Um…she is always in jeans and sneakers. Honestly (my bad) I never checked. I did say that her legs do get “tight” but we have been stretching them.
Disrobing Boo her neuro said: She isn’t tight she is swollen. Very swollen. But it doesn’t seem to bother her. (That should be Boo’s theme song)
So a parent would think okay what do we do about this?
Her response: call some one else. Okay, not really. But she told me to follow-up with two of Boo’s other specialists. That this wasn’t really her field.
Deep breath. I called Boo’s rheumatologist and was told it (based on a phone conversation) that this swelling does not appear to be rheumatological (is that a word? If not I just made it up like undiagnosed) in nature to “give it a couple of weeks” and then go back to our general pediatrician.
I called Boo’s cardiologist and left a message. No return call yet, they must not think it is anything to be concerned about.
But I am. And I am frustrated. How can one little girl have so many abnormalities. Isn’t one enough? Does she really need 15? I’m thinking she is getting greedy.
So here is what I am looking for Dr. House. I am looking for someone with a medical degree to give a crap. I want them to look over Boo’s entire history. I want her examined from head to toe and not say they don’t know. We are okay with being undiagnosed. We are not okay with no one exploring why.
Hi Kerri. If I had a solid answer…but I don't. The doctors don't know. They don't have an answer. Your daugter is a statistic, sad but true. Just like the millions of other's. But we can unite and make a difference. Can Boo eat toast? Or drink smoothies. Add organic coconut oil. As much as you can. If not, try an aloe drink from a supermarkets or whole food, etc. Try a natural doctor or google natural remedies for inflammation. Aloe and coconut oil. I am my own doctor in a way. The ones with degrees follow protocol, but our kids deserve better. Natural resources aren't 100 percent but will help. Also, I will send you a kid friendly probiotic to cleanse her digestive system. That is the cause of 90 percent of disease
i left a nice long comment yesterday and now it's gone! eeek!
Once in a while, you luck on to someone who is interested and follows up. Or so I'm told. We haven't found that person yet. My Husby collapsed just over two years ago with a blood disorder. His blood cannibalizes itself. And no one can figure out what is wrong. He survives on injections now and that is handling the symptoms. But no one has figured out the cause. Or what can be done! You're right. It's so frustrating!
Sooooo frustrating, Kerri 😦
I hope you get somebody to give a crap soon and figure it out. It doesn't make sense that she'd just randomly swell – there must be something to it right? UGH. So sorry – I wish I had an answer for you. So much. Hugs, friend.
This is, unfortunately not an uncommon occurrence! Bethany's finger tips have been orange for six months and we keep getting this kind of run around. We do know at it's not liver related, though! On dr said it's dirt build up! seriously! It looks like she ate cheetos and she's never had one in her life! Anyway enough about us. I hope you figure out Boo's problems and fix them soon. Funnily, I just started watching House on Netflix and was thinking the very same thing you are! I want Dr House!
Thanks, Stacey. I know I am very lucky. I appreciate the advice!!
Thanks, Diane. If I get in touch with Dr. House I will pass on his info!! That is crazy that no one can figure out what is going on with your husband.
I hate when that happens 🙂 But thanks for thinking of me!
Beyond frustrating. Eventually some one will give a crap. I do have faith in there being someone out there who will say I will not stop looking. Oh wait, that's me.
Thanks, Sylvia. It is crazy that there are so many medical mysteries out there. Hope you get your answers soon.
WOW… I too don't have any answers for you Kerri. Which sucks. But I am praying and keeping positive thoughts that a “Dr. House” will find you soon or you find him/her, which ever comes first. 🙂 xoxo
My daughter's specialist may be able to help review her medical history. I sent you a message to your facebook acct which will go to the “other' folder with all the details. I didn't know any other way to send info privately.
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