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robyno
Member in Phase 3
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Posted: Wed Nov 30th, 2005 10:22 |
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Matt will be taking his 7th dose of 100 mg mino tomorrow. He has stopped herxing so he is all set to begin a modified Phase 2 on the weekend.
Matt had his first trip out of the house since he started mino yesterday, when we went to see our doctor late in the afternoon. We dressed him up in his balaclava (the hood you made him comes off when he jolts with his tic, ElizaH, so we will have to wait for an improvement there before that will be very useful) and hood and scarf and his glasses and the only bit of skin that was visible was a tiny bit of the top of his nose. He thought he looked like a "hood" and couldn't wait to see the looks on people's faces when they spied him. I think he was a bit disappointed when nobody took much notice!
It was interesting listening to Matt tell our doctor how he is doing. Matt said that he was sleeping better now and could even look at pictures eg on the wall at home without it hurting as much. So there's another couple of little improvements that are actually HUGE.
Matt did not seem to be affected from his small amount of light exposure yesterday. We were all set to increase his Benicar to 4 hourly today but he didn't think he needed it so we didn't bother. We are pleased that we were able to get out with so little exposure, but it is not something that we will do often. He is much happier at home, listening to his audio books and CDs and having a nap whenever he needs to. He is still very tired.
That's our news for now. I'll have to post on two forums from now on - hope I don't get confused.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
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Posted: Wed Nov 30th, 2005 17:31 |
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Thanks for posting ... 
"It was interesting listening to Matt tell our doctor how he is doing. Matt said that he was sleeping better now and could even look at pictures eg on the wall at home without it hurting as much. So there's another couple of little improvements that are actually HUGE."
good to see the progress.. 
all best for Phase 2.. Barb and the MP Team... 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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supersarcboy
Member in Phase 2/3
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Posted: Wed Nov 30th, 2005 22:58 |
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Robyn and Matt,
We are jumping for joy for you all over here. I am so excited that Matt is noticing improvements, how awesome it is to see growth.
KEEP UP THE GOOD WORK MATT, WE'RE PULLING FOR YOU BUDDY!
All Our Best,
Dawn & Michael
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BARNEY
Moderator
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Posted: Wed Nov 30th, 2005 23:51 |
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Cartwheels for Matt@@@@@@@@@@@@@@@@@@@@@@@@@@
Matt, I am so proud of you and looking so forward to your next improvements...can hardly wait for the day that you can do your own post. You are such a trooper.
Hang in there Matt, we will all make it!!! Grandma Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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robyno
Member in Phase 3
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Posted: Thu Dec 1st, 2005 03:00 |
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Thanks for all your good wishes, guys. It IS great to see the improvements happening, isn't it, even if they are just little ones. I hadn't even realised that it hurt so much to even just look a a picture on the wall until Matt said it was starting to get easier! Makes me wonder what else he has been putting up with that we don't know about.
Dawn - tell Michael that Matt is a fan of those Yugi-Oh cards as well (you can tell that I'm not as I have no idea how to spell it!) and I am sure he will be playing with them again when he is well enough. I'm sure the boys will have a lot to talk about besides the MP. We are very much looking forward to reading about all of Michael's improvements as well.
I forgot to mention in my last post that Matt's doctor is worried about his muscle tone now that he is virtually house-bound and not getting much exercise. He would like to see Matt develop some sort of exercise program. So I have just re-read the exercise threads and decided to give it a big miss for now. Matt is just too tired to be up to much of anything, let alone exercise. I think we might just wait until he is feeling a lot better before worrying too much about exercise. Before Matt got sick he used to run everywhere (we used to joke that he was born without an "off button" - especially on his mouth, but don't tell him I said that!) so I am sure he will get fit again pretty quickly. Hope that is the correct decision??
Thanks again, everyone.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
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Posted: Thu Dec 1st, 2005 03:05 |
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Thanks for posting Robyn 
As you have read in the exercise threads it is better to follow what suits each individual.. I am sure that as Matt gets well there will be no holding him down.. muscle tone will be the least of his problems. 
all best, Barb ... 
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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robyno
Member in Phase 3
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Posted: Sat Dec 10th, 2005 10:47 |
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Matt is now a week into a modified Phase 2 MP and coping very well. His reaction has been much as it was during Phase 1 - the herxing is tolerable, particularly with Benicar q4h the day after the first couple of doses, and he is very pleased with himself. He wants me to cut his hair tomorrow, but not before I take plenty of photos - his fringe is half way down his nose and the back is starting to curl up past his collar! But he says it doesn't hurt to touch his hair any more so we'll see how we go. It will be a huge step.
Matt is trying very hard to find any possible sign of improvement - it breaks your heart! I spoke with his teachers at school this week and was very relieved to hear that home schooling will not be too much of a problem next year and that they will organise it for us. Matt missed most of this year of school (year 7). He got more and more tired as the year went on and in the finish was only managing to get there for a few hours on a couple of afternoons per week. Once he started the MP we just kept him at home - he was too tired to even think about school work any way and we wanted to keep him out of the light. But as he starts to improve next year he should be able to manage to pick up his studies. Once he can read and write and use a computer again he can do a lot of catching up even when keeping out of the light.
I came home from the school all excited at what we should be able to achieve once Matt is not so tired anymore and more of his symptoms have resolved, but I had forgotten just how long a year is to a 13 yr old. The thought of "home school" next year was not appreciated by Matt one little bit. I was told in no uncertain terms that he will not have to stay at home next year, that he is going to get better very quickly from here and that he will be at school with his mates, in his classes next year just you wait and see! Oops - I think I will have to be very careful not to look too far ahead, at least when I'm talking to Matt. We'll just take it as it comes and see how we go, month by month. I don't want to keep things from him but there's no point in scaring him, either.
That's our news for this week. All is going well and planning for Christmas is a great distraction.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Moderator
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Posted: Sat Dec 10th, 2005 14:47 |
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Oh Matt, you are such a trooper!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! So are you Robyn.
Matt, Robyn.....take one day at a time. Take it from me, going out in the light to do what you think you need to do, will only slow your progress. I did what you are doing (stayed in the dark) and did not cheat at all, even with food, but since being out in light exposure and eating probably some things I shouldn't (caring for my elderly parents in another state), things are not going as well.
Temptations to remove glasses (when you shouldn't) and to eat wrong things. It is much harder outside your home, than staying at home. It is only 2/3 years and if you keep busy at home, it will go quickly. My 3 grandchildren home schooled and I loved it. I could take them home with me for as long as I wanted because I took their school work with them and I was their homeschool teacher for all the time I had them. I learned so very very much from their school and even remembered things I had forgotten from school.
It seems like I just started MP yesterday, but on Jan 1, I will celebrate 1 year on MP. I will be well before I know what happened because I will be back in my own home (in the dark) next month.
Take good care of you, Matt, and make your choices very carefully. It is a very short time on MP and a very long time we have been sick.
HANG IN THERE, WE WILL MAKE IT!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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supersarcboy
Member in Phase 2/3
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Posted: Sat Dec 10th, 2005 15:55 |
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Oh Robyn..how I feel your pain. Michael has been at home since May of this year and he pretty much told me in no uncertain terms also that he is going to school next year. He is having such a hard time being cut off from school. He has a teacher who comes to the house two nights a week. I guess we both have to just take one day at a time, and cross that bridge when it comes. But, I already foresee trobled waters ahead. Hang in there. I sure wish you were closer so we could get the boys together. Take care and know my heart is with you.
Best Regards, Dawn
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robyno
Member in Phase 3
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Posted: Thu Dec 22nd, 2005 06:46 |
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Thanks Barney and Dawn - it's great knowing you are all there! I agree, Dawn, we just need to take it one day at a time. We will tackle the problems one at a time and see if we can find inventive ways around them. Matt knows what he can and can't do, and I am sure Michael is the same. They won't be in any hurry to make themselves feel even worse.
Matt is rocketing along on his modified Phase II and seems to have the same pattern of herxing as he did in Phase I. We even seem to be progressing a little more quickly, though we will have to be careful not to push it too quickly. Matt is the one asking what are we waiting for when it comes to ramping up the abx!
Matt let me cut his hair, which is a very big step. He also thinks that his "pulses" (the name he gives his tic) is starting to "feel different" - it doesn't hurt quite so much, which might mean that it is on the way out. It certainly seems to us to be a bit quieter but it is hard for us to see much difference yet. But Matt would know - something is definitely happening.
Matt is very excited about Christmas. Some of our family is arriving tomorrow, which will be a great distraction. The only Harry Potter audio book that he doesn't have yet is on its way, so he'll be set!
Matt, John, David and I would like to wish all the staff and MPers a wonderful Christmas. Because of you guys we will have a great Christmas - we are very grateful to you all.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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BARNEY
Moderator
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Posted: Thu Dec 22nd, 2005 16:55 |
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Matt's Family,
MERRY CHRISTMAS AND HAPPY NEW YEAR!!!!
I almost cry when I hear you tell of Matt's improvements no matter how small they are. He is so sweet and doing a great job of MPing.
HANG IN THERE, WE WILL MAKE IT!!!! BARNEY
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Aussie Barb
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Posted: Thu Dec 22nd, 2005 20:03 |
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Thank You Robyn, John and Matt,
Great to hear all your news.. and we are pleased that you are looking forward to a great Christmas..
To Matt and Michael and Families,
We acknowledge the effort that it takes within and from a Family to do MP.. for All of You. Thank You All for working with us.. we are so very happy to assist you in any way we can..
 Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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robyno
Member in Phase 3
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Posted: Sun Jan 1st, 2006 06:13 |
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Matt had a great Christmas, and so did the rest of us. We managed to find quite a few presents that Matt can use now, without having to wait untill he is better. Audio books are a great invention, and one of his favourite authors (John Marsden - can thoroughly recommend his books for young adults - and not-so-young ones as well) released a new book before Christmas that was also available on CD, so that was a big hit. In an inspired move my sister had a CD made for Matt in which he could live out his footballing dream - it was a broadcast of a Grand Final in which he took the field for his favourite team (Carlton, for all the Aussies who would know what I am talking about) in the dying moments, with his team down, to kick three goals in quick succession and win the game! I haven't seen Matt laugh so much in a long time!
We also made a list today of all of Matt's symptoms so that we can tick them off, with the date at which they went or started to disappear. We could already tick off the nose bleeds and haircut and the chest pain that he complained of occasionally that seems to have disappeared completely. Then there is his tic that is starting to feel different and we hope is on the way out. Now he reports that he is starting to read the odd phrase like a label on a box or the time on a clock! That is definitely big news and a step in the right direction. So our list is looking better and better all the time.
The other thing that has made for a great Christmas is reading that Aussie Barb's list is growing as well!! We are so happy for you Barb - you do so much for everybody else you just have to get better yourself. And it sounds like you are!
We are very much looking forward to a great 2006 and sharing it with all the MPers and staff.
Take care, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Aussie Barb
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Posted: Sun Jan 1st, 2006 17:25 |
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It is a Happy New Year already with so much good news!!
kicked (at least) three goals in quick succession!
nose bleeds
haircut
chest pain
his tic is starting to feel different and we hope is on the way out.
is starting to read the odd phrase like a label on a box or the time on a clock!
Thank you All,
Barb...
 << cheering for 'Carlton Matt'
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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robyno
Member in Phase 3
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Posted: Sun Jan 8th, 2006 06:22 |
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Thanks for your cheer squad, Barb - the poor old Blues can do with some cheering! I'm looking forward to showing them to Matt when he can look at a screen again.
Matt is continuing on nicely with his modified Phase 2 MP. He is moving through the antibiotic doses even more quickly than he did during Phase 1. Between his herxes we can notice that his energy levels are increasing slightly and he is spending more time out of his room. I am enjoying being able to read to him again and not have him say that he is too tired to listen.
He is also reading labels and clocks all the time, out loud of course, so we can see how well he is doing! He tells us a few times each day that he is getting better so his mood is excellent. While he is not telling us the time he is admiring his new iPOD speakers that he spent all his Christmas money on (they "rock", apparently!).
I forgot to mention in the last post that we asked Matt why he thought he was eating so much better now. He said that not having that horrible taste in his mouth any more helps........drrrrrrr! - we had fogotten to put that on his symptom list and fogotten to ask him how it was going for quite a while. Apparently the metallic taste he had for months has been completely gone for weeks now, so there is another one to add to our list and give a big tick to!
So, while we have a very long way to go, we have come a mile already.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Margo
Member in Phase 3
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Posted: Sun Jan 8th, 2006 18:49 |
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Great news about Matt's improvements! Improvement in the little things really helps with quality of life.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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robyno
Member in Phase 3
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Posted: Sun Jan 15th, 2006 08:57 |
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Matt has struggled a bit more than usual this past week as we increased his abx dose a bit too quickly and didn't give him his couple of herx-free days. We have learned our lesson and so has he - the MP is something that you just can't hurry. His next couple of days should be pretty much herx-free so it will be interesting to gauge his level of improvement. Matt told me today that he looks at pictures and the clock and labels etc without even thinking now as it doesn't hurt anymore. He is so looking forward to being able to read a book again - it will happen, we just have to be patient.
Matt's 25-OH vit D levels were down in their teens last ime it was measured (12.4 ng/ml on 7 Dec 05), so that is good news.
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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robyno
Member in Phase 3
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Posted: Mon Jan 23rd, 2006 01:26 |
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Matt enjoyed his couple of herx-free days last week. It was great to see that his tic is so much quieter when he is not herxing. He asked me to take him for a drive past his school just to check it out but was very cheerful about it and told me that I shouldn't worry and that he would be back in no time. Kids are funny - they complain about having to go back to school after the holidays but deep down it is just so important to them that they be there. I know I won't ever hear Matt complain about going back to school again!!
Matt's reading is improving all the time. Today he read all the headlines and big print on the front page of the Canberra Times, and even a couple of lines of the fine print. That is fantastic!
Matt just yelled out to me to say hi to everyone, especially Aussie Barb and Barney. So, "Hi!!" from Matt! He sure is cheerful these days!
Regards, Robyn
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Mum of Matt 15 yrs 45 kg, Rickettsia+Lyme sympt,~90% recovered; Noirs Aug05, avoid light&D, Beni 13Sep05 20mg Q6H; in Ph 3 now & has his life back!!
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Sydney Chris
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Posted: Mon Jan 23rd, 2006 20:55 |
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Hi Robyn,
I don't have Barb's selecton of crazy cartoons, but if I did I would use the one with the really really big smile... 
Congratulations to Matt and yourself on your progress and understanding of how best to use the protocol to successfully heal.
Checking out school seems to be a very important psychological step in his awareness, (at a sub-conscious level at least) that he will soon be well.. wonder what else he will start to check out as he continues to improve..
Our very best... ChrisLast edited on Mon Jan 23rd, 2006 22:23 by
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Post viral syndrome IgG deficiency 125D74 IgG shots Ph1Mar05 Ph2Nov05 ModPh2Jan06 r/t KFTs Ph3Aug07 NoIRs lite exp r/t commute 25D<7.2(Jan07) 25D14.4(Mar08)
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Aussie Barb
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Posted: Mon Jan 23rd, 2006 22:26 |
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 from Barney and Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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