Having problems with message search?
Hi all, sorry for not being touch these past few months.We will be at the NIH tomorrow to. Alex is now on the max dose of the kineret and although he has more energy it has had very little help with his pressure, infact has caused to to go higher. He is now on 10mg of prednisone daily. But because of cognitive problems it is now time to place a shunt. His new neurologist has been wonderful, but can't find the reason why his csf isn't draining. We have also been to the Scottish Rite hospital in Dallas to understand his growth in his right knee. and because the right side of the knee looks as though the growth plate has closed his leg is growing outwards. He will need to have the left side of the right knee stapled to try and slow down the growth rate and hopefully decrease the valgus. This in turn could shut down the grow plates for that leg. I'm begining to thing that although Alex is much better on the kineret we are infact spending more time at the hospital than I would like.
Hello to the new family, I hope John has already welcomed you but I will say anyway. If you would like any photos, history or links to clinical papers that you have felt helped you and you wanted others to hear about it then please send them either to our e.mail Jkbarton@... or contact me for the snail mail address.
Sherri, I will be in touch soon I promise. love to Miranda.
Love to all the Children and look forward to meeting up with those who will be at the N.I.H. this coming week.
love Kate
Offline 
Send Email