Liam Update number 2 | Arthritis Information

 

HI guys, just thought I would fill you in.

Liam's paed rheumatologist phoned last night and said he had told me it was going to be a long hard road, but he doesn't see Liam like I do racked in pain, I feel we need to do more.  So until Wednesday he told me due to Liams constant nausea and tummy pain, I was to stop his brufen and give him nurofen twice a day instead followed by 100mg of tramadol at bedtime. ( I just phoned and left a message because Brufen and nurofen are both the same thing!)  He said he didn't think the spasms Liam is having are epilepsy related they are just normal nighttime myoclonic jerks, to which I totally disagree also.

Anyway I took Liam to see the consultant at the local hospital and she was shocked when I told her about his constant pain and epileptic fits becoming more regular.  She seemed very passionate about Liams case and urgently ordered an ECG suspecting rheumatic fever, I know he was tested for this but she wants it repeated due to his high titre of streptococcal,  she said she doesn't agree with the paed rhemy that it is temporary as he has been sick with joint pain now for 7 mths.  She told me to take him out of school and line up homeschooling for January next year just in case he is still not under control.  She asked me to describe his fits and said he has "focal grand mal tonic clonic seizures" which we knew but we did not know that these are the most serious seizures and that Liam will probably be on medication for the rest of his life.  She ordered a heap of blood tests including ESR, CRP, FBC, ISOT, (rheumatic fever) and RF.  I am pleased that she is on the case, we go back to see her next Monday so I will see her then.  Liam is still in pain and looks very unwell, she said to me as I was leaving, you have a very sick little boy and I would like to hospitalize him for 3 days for observation and extensive physio which will continue after he is discharged.   She said we will wait until he sees his paed rheumy next weds and get all the results we are waiting for on top of also getting his last 7 months medical history from my GP, she said she will be very interested to see what the rheumy says this time!  I now call her ACTION WOMAN!  Thanks for taking an interest, sorry it is so long.  Hugs Janie.
janiefx2008-11-11 21:58:03Wow. Keep us posted. You should be getting some answers now. Bump - as you all asked me to let you know what happened. Thanks Janie.XXJanie - your son is very lucky to have you as a concerned parent.  Best of luck, and I am so happy you found a competent doctor, despite the prognosis.  At least you have a base of truth to build from to help your son.  But lastly, I am so sorry you had to go through the "not being believed" part of medicine - its astonishing.  Take care and get lots of rest for the "long haul ahead".  Huggles ~~ CathyGlad you have a dr. that is jumping on the situation.  Poor little guy-I hope you get some answers soon.  Thanks for keeping us posted. Sounds like the other doctor is a good one- thank goodness! best of luck to you in getting to the bottom of this whole thing!Janie,

Janie, Hi Janie, Hi Janie, it will be interesting to hear what reaction the ped.  will have regarding his non-action.  Am so happy that you were persistent and like others have said Liam is lucky to have you as a parent!!  I'm sorry that he's this ill but it sounds like he's on the right track with the new doctor.  Keep us posted.  LindyJanie - I just can't imagine how worried you must be. Whenever one of my boys has health problems I am a wreck, and they have normal everyday illnesses. My heart goes out to you. Stay strong. Liam is very lucky to have you as his advocate. Janie, I am so sorry your little guy is having to go through so much! As others have said, you are indeed a wonderful Mom and it's so good that you are there to advocate for him and to keep pushing. You got a wonderful doctor this time. I hope she can continue to care for him on a permenant basis. lorrie2008-11-21 19:48:12HI GUys, YOU ARE ALL SO WONDERFUL!  Truly supportive forum this one
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