The Rheumatologist never came on Friday but should do so on Monday. It looks like he has a bigger problem than was initially thought (really??!! should have listened to his mother) and Arthritis has been bandied about a bit. I have to say, I resent that he could have something like this, I think autism is enough for him to deal with.
But, really, I think my problem here is that I miss my happy little boy sooooo much. He is in a lot of pain, all the time. He is unable to sit for more than a few mins, and even then he can't do that until about 40 mins after he gets his pain meds. His social interaction with his siblings is non-existent, he rarely speaks anymore, or laughs for that matter. He has several big sores on his face where he keeps digging his nails into himself and cutting himself and keeps going back to dig out more skin. He ate two biscuits and a packet of chocolate buttons yesterday, about average for him now. Some days he won't eat at all, nothing! He has lost a lot of weight.
I am stunned at the effect this issue is having on his quality of life. I expect we will be in hospital for most of next week while they do more tests. Poor fella is distraught being back there. He screams when I put him on the bed because bad things happen on the bed, examinations, blood being drawn, that kind of thing.
It is two months since he started limping, 6 weeks since he last walked. I am going to camp out at the hospital and refuse to leave until we have answers. They will have to arrest me to get me to leave! This has gone too far and it shouldn't have taken this long for them to listen to me and recognize his pain.
Fed up.......much?
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45 comments:
Oh Jen, I'm so sorry! ((())) I hope you get the answers and some help to restore your sweet boy's health.
Poor possum. Hoping for the best!!!
Ranting helps :)
Oh Jen, big hugs to you and to HRH! I'm hoping you get some answers very soon!
Oh no. no! This is just so awful and there is nothing any of us can do but send good, kind and caring thoughts to your little lovely - and to you. I pray that the medics will get to the bottom of this as it is just so painful for him, and for you to watch feeling unable to do a thing more than just being there and loving him. xxxx Massive hugs to him and to you
Oh Jen I'm so sorry this is happening. I can't say much helpful but my thoughts are with you, and hope being in hospital he'll at least have access to pain meds to make things a bit more bearable.
Have lots of these (((((jen))))) and (((((HRH)))))
xxxxx
I cannot wait until you get answers- real answers- and can put this behind you and get that sweet, loving boy back. It will happen. It will.
HUGS!!!!!!
Oh, Jen! Two months is SO not OK! It would be too much for a typical kid, but for one who is on the autism spectrum... it's just horrific. I hope you get answers and get them soon! AND that there's something that can be done.
The fact that you and your son who is in PAIN have been made to wait and wait and then wait again in a situation that has "CRISIS" written all over it makes my blood boil!
Hugs to you & HRH
p.s. did you see my e-mail a while ago about Jake's amazing pediatric rheumatologist who is also our bio-medical autism consultant? Maybe she could do a distance consult? She's brilliant.
Oh sweetheart, I can't even imagine. :( Really hope they figure out what's going on and are able to fix it. *hugs* and love xx
I'm hoping they figure it out soon and you get your happy little boy back. My heart and thoguhts go out to you.
Hugs and prayers. Please keep us posted.
Jen, this calls for the exclamation Unf'ing believable! I am so sorry and hope that you get some answers or at the very least, recognition, some time soon. Is there any chance that you could take him to a different medical establishment or are you bound to this one? I will say prayers for you and HRH.
Oh my poor friend. I feel so bad that I can't offer you anything not even consolation words because you are in such an awful place at the moment. You camp out girl - we'll all make banners for you to put up. I'm so sad for the little man because he was doing so well sorting out his autism. It is not fair!!!Keep your phone /laptop charged & share. We are here even if we are impetant! (sp!)
I am so sorry he (and by extension, you) are going through this. I'm glad the pain meds help a bit.
I'll keep him in my prayers that they'll find the problem and fix it!
hugs
Ugh! Still sending my prayers and virtual hugs across the see to you and HRH.
Best wishes to you and HRH. It really isn't fair that you should be having to deal with all this.
Oh man. Your post made me tear up for HRH. I'm so sorry but you are doing the right thing. Stick to it and if you ever need me, please just send the email!
Oh...this is just unbelievable. I'm so, so sorry this is happening. I'll keep praying for those answers and some relief. ((()))
It's a horrendous situation. Truly unbelievable. They better bloomin will sort him out this time. I am sure when they work out what it is there will be a solution and you'll have your little boy back
The poor little man and poor you, I have been in my fair share of hospitals with my not so little man but when he was having seizures we were in every five weeks, lots of things were bandied about before finally we got a answer so I know what you are going through. I really really hope that this is sorted very quickly for you both and you get your happy little man back soon, big hugs xxx
this is just not on i totally understand pain and i am a nt adult cannot imagine what this is like for a child.my friend for years was told her child has very "loose" tendons and joint she was taken in on an emergency last year after my mate went to a physio cause she was fed up physio phoned gp straight away and straight to hospital she had been walking around for years with a slipped hip she was about 12 at the time
So sorry to hear of your troubles. Our special little people just don't understand what it's all about, and that any tests being carried out are for their own good. Whenever my little boy is unwell, all he can tell me is "I hurt". I can't imagine how your little one must be feeling. It's so unfair. Keep your chin up and hope it gets better for you xxx
So sad to hear that he's having such a hard time, and I am praying that they figure this out soon. Once my son has something that sounds somewhat similar and it turned out to be an infection in the bone. It was scary, but they did manage to clear it up.
I agree that you should camp out and agitate until they come up with a diagnosis. This is way too much suffering...and for way too long.
"/
Oh Jen :(
Thinking of you all xx
Oh my gosh. I am so wrapped up in how miserable I'm feeling about things that have happened to me this week but reading this really does put my problems in to perspective. I hope that this is the week when you get some answers. It must be so very hard watching your own child suffer like this.
sending love xxx
I really really didn't realise how much pain and difficulty HRH now has :( It's just appalling that it has taken so long for the specialists to listen properly to you. ((hugs))
Jen, that is horrific.
Sending you virtual hugs and strength. I really hope this crisis ends soon for you and your beautiful little boy recovers soon, he will, I am sure of it.
The poor little mite... It is soo unfair! Hugs to you both!
Horrible.
Sending thoughts of the most positive kind for competent and caring medical care that gives HRH pain relief and recovery of his former bright life. Amen. *signofthecross*
Barbara
I hope and pray you get answers very soon. I am sending any and all good vibes and prayers your way! xxx~ Darla
I am so sad to hear this. Hope everything will turn around really soon. My best wishes
I am so sorry to hear this. It must be so hard for you to watch him go through all of this. I am praying that he starts feeling better soon.
Not a rant at all, I can't imagine how tough this is. Pain hurts, and I'm not joking.
Thanks for following my blog, my wife and I have combined ours at http://bothsidesofthecoin1.blogspot.com. It's the same as mine, but my wife adds some actual good writing sometimes.
You are allowed to rant. I hate this for him and for you. I hope you get the help and answers you need soon. Thinking of you every day.
Oh Jen. I am so so so sorry that he (and you) are going through this. The digging his nails in his face...this is breaking my heart. Poor HRH. This has to be solved. I wish I could do something more than just hope and pray for you both.
Sounds worthy of more than a 'medium' sized rant to me. Poor little man. :( I hope that they get on top of things soon and he gets some relief. I hope you get your happy boy back soon.
I am sooo sorry you guys are dealing with this. I wish I was some brilliant doctor and could fix HRH right up. I'll be praying that they figure this out soon.
And I agree: autism is enough. Why should your poor boy have something else he has to deal with on top of that?????
Oh Jen, I'm so sorry but hopefully this will be the last hurdle in getting to the bottom of what's going on with HRH. I really feel for you and hope they give you some answers soon. You should do the biggest rant out about this, nevermind a medium sized one x
I'm so sorry you're both going through this. Really hope he is out of pain soon. This is too much, it is totally okay to rant about it. I'd be ranting worse, I'm sure.
Good lord Jen, I would be having a large or mega huge rant by now. Wow you truly amaze me with you ability to keep a smile on your face. What a bloody nightmare. This needs sorting for all of you. I have been thinking of you all often
OMG! Jen, this is insane. I wish I could do something. All I can do is send prayers, love, thoughts and well.. I guess that covers it. We are all here for you.
I'm sorry I haven't emailed you recently. I've been crazy busy starting therapies, and Intensive programs and working. I am here, I swear I am. I'll fill you in soon. I don't want to overwhelm you with other stuff.
HUGS
Hi Jen!
Wasn't sure how to reach you- there's no contact info on your blog. Could you please email me - I'm compiling a list of autism bloggers
I think you're being very restrained in your rant. Thinking of you and your wee boy very much. Really hope it gets sorted out very soon.x
Wow, I cannot believe it is still so bad!! They need to get their act together over there!!! I hope they figure it out ASAP and get him better. Or else come over here...we have really good dr's. ; )
Big hugs to you all it sounds like such a nightmare I am so sorry xx
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