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tjsmom2
Member
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Posted: Wed Jul 23rd, 2008 06:54 |
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Hey All, Tj's mom here, feeling stuck and sad. Thrilled the study site has grown so much, frustrated that there might be a new blockade when/if we are ready for phase one.
We find ourselves between a rock and a hard place with getting the rx from TJ's doc anyway - although I do have/had contact with 2 docs who not only prescribe, but have/are on the mp themselves - if insurance would cooperate, that might be a plus on the mp application...TJ had a much better school year and we were (crazily) hoping lifestyle and dietary changes had brought his ratio down - now we know it has risen, and it's likely he is feeling better due to the "steroid effect".
He's a mature kid, and we feel he has to have a say in this. The fear of feeling worse before feeling better - messing with his first year of highschool...sigh -I hadn't cried about this till now. I know the mp is a miracle one has to work for - I just wish with all my heart that it was me who was sick, it's so d*** unfair - he is an awesome boy.
Sorry - I better sign off now - thanks for listening.
Kim
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I am Kim, TJ's mom - TJ was DX in 3/07 with CFIDS. Posts on the MP site from that year. TJ is PRE-MP, his doc will NOT prescribe Benicar at this point - TJ is 14 years old. DX vitaminD levels 25D=11. 1,25D=34. Latest levels 7/10/08 25D=12. 1.25D=44 ESR=9
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JRFoutin
Advocate
| Joined: | Sat Oct 13th, 2007 |
| Location: | Oregon USA |
| Posts: | 492 |
| Status: |
Offline
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Posted: Wed Jul 23rd, 2008 22:47 |
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TJ,
As a mom and grandmother, I know all about the tears for teens. Hang in there, mom.
Take some of that excess energy to use this time productively to help TJ get involved in learning how to understand his symptoms and report them accurately, as well as both of you making a habit to study about the Pathogenesis and Protocol. This is often a hurdle even for adults who report for themselves.
During the preparation and wait time, he might want to keep a journal of everything he eats and how he felt in the morning or evening of any day as a way to practice reporting in general, to develop a strong habit. The transition to reporting symptoms to you and his doctor(s) during the MP will be greatly diminished by just doing that little thing every day.
Good you have found doctors and absolutely important you insist they get involved on the study site in the Private Section for Health Professionals.
Best to you TJ--Janet
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12/99:Sarc, 9/00:noPred, Mar05:no-D+lo-lght+NoIRs, 8/09/05 began MP. MP ph3 yr3 and getting better every day.
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