Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Hey everyone! I just heard about this group yesterday from a very funny girl I met at my first Cytoxin IV ALL day stupid drip thingie... It was in the " Drs. Chadha " office (yeah, there are two of them).. Meghan, if you're reading this, Hi! ) I don't have RA but I was diaganosed with Diffuse Scleroderma last fall and everything was pretty ok (annoying tight, itchy skin in hands and forearms but manageable) until they found some spots on my lungs that indicated active scleroderma i.e. scarring on my lungs. SOOOOO ... a week later takes me to yesterday when I started the Cytoxin ... once a month for 6 mos. Plus, I started to take prednisone 40 mg am and 20 mg at lunch .... talk about an energy booster ) I didn't even realize I had low energy but now my partner can't get over the fact that I'm still awake and alert at 10 pm every evening!!!Woo hoo! So far I haven't had any nasty side effects from the Cytoxin ... I'm leary of saying that in case I jinx myself but its been over 24 hours now so ... I think I'll be ok? So, is there room for a scleroderma patient in this forum? Inquiring minds want to know ... Robin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Welcome to the group, Robin. Of course we have room for a scleroderma patient. Not an MD On Sat, Jun 28, 2008 at 9:05 AM, chetwynator <chetwynator@...> wrote: > Hey everyone! I just heard about this group yesterday from a very > funny girl I met at my first Cytoxin IV ALL day stupid drip thingie... > It was in the " Drs. Chadha " office (yeah, there are two of them).. > Meghan, if you're reading this, Hi! ) I don't have RA but I was > diaganosed with Diffuse Scleroderma last fall and everything was > pretty ok (annoying tight, itchy skin in hands and forearms but > manageable) until they found some spots on my lungs that indicated > active scleroderma i.e. scarring on my lungs. SOOOOO ... a week later > takes me to yesterday when I started the Cytoxin ... once a month for > 6 mos. Plus, I started to take prednisone 40 mg am and 20 mg at lunch > ... talk about an energy booster ) I didn't even realize I had low > energy but now my partner can't get over the fact that I'm still awake > and alert at 10 pm every evening!!!Woo hoo! So far I haven't had any > nasty side effects from the Cytoxin ... I'm leary of saying that in > case I jinx myself but its been over 24 hours now so ... I think I'll > be ok? So, is there room for a scleroderma patient in this forum? > Inquiring minds want to know ... > Robin -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Hi Robin Welcome to the group. This group is wonderful and of course you should be here. Auto-immune disease is or at least seems to be a big circle, most who have one if the diseases have more and they are related.I have learned so much from this group. always finds the best sites to visit that offer help. Glad to have you here Heidi M On Sat, Jun 28, 2008 at 11:21 AM, < Rheumatoid.Arthritis.Support@...> wrote: > Welcome to the group, Robin. > > Of course we have room for a scleroderma patient. > > > Not an MD > > On Sat, Jun 28, 2008 at 9:05 AM, chetwynator <chetwynator@...<chetwynator%40>> > wrote: > > Hey everyone! I just heard about this group yesterday from a very > > funny girl I met at my first Cytoxin IV ALL day stupid drip thingie... > > It was in the " Drs. Chadha " office (yeah, there are two of them).. > > Meghan, if you're reading this, Hi! ) I don't have RA but I was > > diaganosed with Diffuse Scleroderma last fall and everything was > > pretty ok (annoying tight, itchy skin in hands and forearms but > > manageable) until they found some spots on my lungs that indicated > > active scleroderma i.e. scarring on my lungs. SOOOOO ... a week later > > takes me to yesterday when I started the Cytoxin ... once a month for > > 6 mos. Plus, I started to take prednisone 40 mg am and 20 mg at lunch > > ... talk about an energy booster ) I didn't even realize I had low > > energy but now my partner can't get over the fact that I'm still awake > > and alert at 10 pm every evening!!!Woo hoo! So far I haven't had any > > nasty side effects from the Cytoxin ... I'm leary of saying that in > > case I jinx myself but its been over 24 hours now so ... I think I'll > > be ok? So, is there room for a scleroderma patient in this forum? > > Inquiring minds want to know ... > > Robin > > -- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2008 Report Share Posted October 26, 2008 Your story sounds exactly like mine the next time I took mr daughter back to the Ped he started looking at her neck diagnosed her with torticollis. A little flatness is normal. My advice is to watch carefully if you are worried, pursue things further.Sent from my Verizon Wireless BlackBerryFrom: "alishajim" <alishajim@...>Date: Fri, 24 Oct 2008 19:43:14 -0000<Plagiocephaly >Subject: Newbie! Hi everyone! I have a almost 6 week old girl. At our first well baby visit he commented that she had a flat spot on one side of her head. he just told me to make sure I'm changing her positions and spending enough tummy time with her. She does favor laying to one side so I'm diligent as much as I can be with changing her side. She doesnt mind tummy time so we've been doing that also. On one of my mommy groups plagio was brought up and I was not aware of it before. Is some degree of " flatness " ok? Or should I immediately be concerned and plan to see a specialist? How much early prevention is possible? Thanks!! Alisha~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I would do as much repositioning as possible right now. she is going to grow a lot in the next few months and it may fix it on its own. i think most companies wont band until 4 months. Can you notice the flat spot? Tori-DocBand 3 weeks From: alishajim <alishajim@...>Subject: Newbie!Plagiocephaly Date: Friday, October 24, 2008, 3:43 PM Hi everyone!I have a almost 6 week old girl. At our first well baby visit he commented that she had a flat spot on one side of her head. he just told me to make sure I'm changing her positions and spending enough tummy time with her. She does favor laying to one side so I'm diligent as much as I can be with changing her side. She doesnt mind tummy time so we've been doing that also.On one of my mommy groups plagio was brought up and I was not aware of it before. Is some degree of "flatness" ok? Or should I immediately be concerned and plan to see a specialist? How much early prevention is possible?Thanks!!Alisha~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2008 Report Share Posted October 27, 2008 I noticed my son's " flatness " around 6 weeks, too. He also had tort, and I stretched him three times a day and did tummy time with him like it was my job! I kept him out of swings/bouncers, etc and limited the amount of time that I had him in his carseat carrier. I tried and tried and tried to reposition him, but he wiggled his way out of everything I did - there ARE people who have been successful with repositioning, though, so DON'T give up on it! My son had to be banded, but I think the biggest reason is because his plagio started in utero (I have a uterine anomaly and he was wedged in pretty tightly). His head just kept on growing in the shape it had started in when I was pregnant with him... My oldest had the same issue, but he was breech and his head was still funny shaped when he was born - his ped even suggested that he might have craniosynostosis - but he rounded out just fine. I changed pediatricians along the way, and the current one is wonderful - she had me bring my younger son in to check his head shape again between his normal well visits, and she sent us to a specialist before he was even three months old. THen I took him to Cranial Tech for a consult when he was about three months, and at four months he was scanned for his helmet (a DOC Band). They took measurements of his head at Cranial Tech and his plagio fell into the severe category - it was really unlikely that it would round out on its own, especially with him resisting the respositioning. It's great that you've picke up on this so early - so many people I've talked to wished that they'd noticed it this early on or that their ped didn't suggest the " wait and see " approach. TAKE PICTURES - this was really helpful for me - after a few weeks when I still didn't see any change, that's when I decided to take the next step. And good luck!!!! Jess Mom to Luke - 5 months old - 3 weeks in DOC Band > > Your story sounds exactly like mine & the next time I took mr daughter back to the Ped he started looking at her neck & diagnosed her with torticollis. A little flatness is normal. My advice is to watch carefully & if you are worried, pursue things further. > Sent from my Verizon Wireless BlackBerry > > Newbie! > > > Hi everyone! > > I have a almost 6 week old girl. At our first well baby visit he > commented that she had a flat spot on one side of her head. he just > told me to make sure I'm changing her positions and spending enough > tummy time with her. She does favor laying to one side so I'm diligent > as much as I can be with changing her side. She doesnt mind tummy time > so we've been doing that also. > On one of my mommy groups plagio was brought up and I was not aware of > it before. > > Is some degree of " flatness " ok? Or should I immediately be concerned > and plan to see a specialist? How much early prevention is possible? > > Thanks!! > Alisha~ > Quote Link to comment Share on other sites More sharing options...
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