http://mpsforum.com/forums/ Support for MPS and ML Families en Fri, 18 May 2012 09:50:10 GMT vBulletin 60 http://mpsforum.com/forums/images/misc/rss.png http://mpsforum.com/forums/ http://mpsforum.com/forums/showthread.php?75419-Just-to-let-you-know!&goto=newpost Thu, 17 May 2012 19:47:53 GMT

For those that have not been following Pedalitforjazzy on FB - just to let you know that Dave, Tom & Rich did the 931 mile cycle from one end of England to the far end of Scotland in 9.5 days --- yes they all did 931 miles each, together all the way.

A couple of injuries -- Dave had a swollen ankle on day 6, Rich had bad achielles heel from day 3-7 --- and Also Dave knocked Rich off his bike on day 8!! No injuries there apart from Rich's pride!! lol!

So far on the website www.pedalit4jazzy.co.uk we have £16,500.00 (26 thousand dollars) for Acorns childrens hospice and Alder Hey Childrens Hospital!!

Been a rollercoaster -- busy busy busy getting sponsorship, media attention etc - with the knowledge that this is all cos our baby girl is an Angel :cry::cry::cry::cry::cry:

Jasmin was beside the guys all the way though I believe :heart ]]> Emotions Ria http://mpsforum.com/forums/showthread.php?75419-Just-to-let-you-know! http://mpsforum.com/forums/showthread.php?75417-Magic-Bean-Shout-Out-5-17-12&goto=newpost Thu, 17 May 2012 13:29:11 GMT It's been a while, so let's see how everyone is doing right now!


Logan's been doing well for the most part. He had a nasty double ear infection last week, but it's cleared up now. We're working on scheduling surgery for a new port as soon as possible, although we have to work around the end of the school year college schedule so Andy can be around for the girls. ]]> Emotions Robin http://mpsforum.com/forums/showthread.php?75417-Magic-Bean-Shout-Out-5-17-12 http://mpsforum.com/forums/showthread.php?75415-Norway-s-National-Day!&goto=newpost Thu, 17 May 2012 09:15:48 GMT It is Norway's National Day today!

The weather is cold, and its raining... The degrees shows 7 Celsius..

I dont have any big plans, just relaxing. I'm watching TV where they show the celebrations in the whole country. And they also shows celebrations from around the world.

Happy National Day! ]]> Emotions Vibe http://mpsforum.com/forums/showthread.php?75415-Norway-s-National-Day! http://mpsforum.com/forums/showthread.php?75414-A-new-job&goto=newpost Wed, 16 May 2012 21:20:09 GMT I jsut have to exoress my happiness here - I am still in the hospital and friday wil be 3 weeks and I so needed some good news given the advocacy... I jsut have to exoress my happiness here - I am still in the hospital and friday wil be 3 weeks and I so needed some good news given the advocacy work i did (un-paid but well loved) for the American Pain Foundation closed last week - APF ceases to be any-longer. Anyways I was sad and a little down with being in the hospital yet.
Last weekend I got an email asking for my help with sending out info on the Conference and further in the email asking if I was interested in working for a group that does alot with rare disease and MPS out-reach. I had a conference call today after a really up and down week and I got the job + pays extremely well and is PRN ie whenever I have time or as much or as little as I would like to do. I am supremely excited as ive done a little with this group before and was so well organized. Just Excited and good news was awesome esoecailly because it's doing what I already love!!! ]]> Emotions ericajth http://mpsforum.com/forums/showthread.php?75414-A-new-job http://mpsforum.com/forums/showthread.php?75413-National-MPS-Society-Conference-MPS-I-Family-Scholarship-offer..&goto=newpost Wed, 16 May 2012 21:14:29 GMT Hi MPS I Families, this letter was sent from the MPS Society but I was also asked to submit it from the Anonymous donor to MPS I Families anywhere I... Hi MPS I Families, this letter was sent from the MPS Society but I was also asked to submit it from the Anonymous donor to MPS I Families anywhere I thought might reach families who where not a part of the MPS Society and who would be interested. Due to a Research study drs being at the Conference and doing a joint talk Sat. night the donors would like as many families to apply and come to the conference as possible or otherwise there will also be a set up Conference call in # for families unable to attend but who want to hear about the research that will be going on. Any questions please let me know and/or contact the MPS Society.
The offer is based on the research studies that are in motion and potentially headed to clinical human studies for MPS I and thus why the offer is being extended to MPS I Families.
Thanks,

Erica ---- See below --



May 10, 2012
Friends-
An anonymous donor is providing funds for MPS I families to attend our 26th Annual Family Conference in Boston July 26 – 28, 2012. Up to $2,500 per family is available on a first-come, first-serve basis, as there are limited funds available. The funds can be used for registration fees, hotel room plus tax, and transportation (airfare and taxi between airport and hotel; or mileage and hotel parking).
This special opportunity is available to MPS I families and adults whose membership is current for 2012. Check with Laurie, laurie@mpssociety.org, whether your membership is current.
If you are interested in this special offer, we require that you:
1. book your hotel room immediately, to ensure availability, 800.225.2008. The hotel rooms in our block are going fast
2. fill out the special MPS I registration form
3. send completed registration form and required $100 deposit to the office (deposit will be refunded at the conference)

You will receive a letter indicating that your registration has been received and the amount of funds approved.
If you have questions, please call Laurie, 207.843.7040.
Looking forward to seeing you in July!
Barbara
Barbara Wedehase, MSW, CGC
Executive Director
National MPS Society
PO Box 14686
Durham, NC 27709-4686
919.806.0101 (phone)
919.806.2055 (fax)
www.mpssociety.org ]]> The Latest News About MPS/ML ericajth http://mpsforum.com/forums/showthread.php?75413-National-MPS-Society-Conference-MPS-I-Family-Scholarship-offer.. http://mpsforum.com/forums/showthread.php?75412-Purplicious!-May-15th!&goto=newpost Wed, 16 May 2012 02:28:27 GMT Wow what a day!! I remember last year being really purple, but this year was really, really purple! :happy This is good stuff...just think how many... Wow what a day!!
I remember last year being really purple, but this year was really, really purple! :happy
This is good stuff...just think how many more people know what MPS and/or ML is.
Spreading awareness gets us another step closer to a cure!

Go TEAM PURPLE!

Happy International MPS/ML Awareness Day!

:yay:yay ]]> Emotions jmeb17 http://mpsforum.com/forums/showthread.php?75412-Purplicious!-May-15th! http://mpsforum.com/forums/showthread.php?75409-Sanfilippo-Registration&goto=newpost Mon, 14 May 2012 22:32:18 GMT Hello! If you have a child with Sanfilippo A or B and live in the United States...Please post here, you location, age of child and e-mail address.... Hello! If you have a child with Sanfilippo A or B and live in the United States...Please post here, you location, age of child and e-mail address. Team Sanfilippo is trying to help Shire determine the best place for future trials. Thank you!! ]]> Forms of Treatment Misty Luthcke http://mpsforum.com/forums/showthread.php?75409-Sanfilippo-Registration http://mpsforum.com/forums/showthread.php?75408-MPS-Conference-Boston&goto=newpost Mon, 14 May 2012 16:34:50 GMT Who's going? The opportunity has suddenly come up for us to possibly go. We are trying! ]]> The Latest News About MPS/ML ClbsMm2000 http://mpsforum.com/forums/showthread.php?75408-MPS-Conference-Boston http://mpsforum.com/forums/showthread.php?75406-Happy-Mother-s-Day!!!&goto=newpost Sun, 13 May 2012 20:40:53 GMT Happy Mother's Day, ladies! I hope you are all enjoying your day :) ]]> Coconut Lounge Robin http://mpsforum.com/forums/showthread.php?75406-Happy-Mother-s-Day!!! http://mpsforum.com/forums/showthread.php?75405-Knee-pain&goto=newpost Sun, 13 May 2012 17:09:13 GMT Missy Miss has been complaining about her knees lately. I will call the orthopedic doctor tomorrow but has anyone else had experience with this? I... Missy Miss has been complaining about her knees lately. I will call the orthopedic doctor tomorrow but has anyone else had experience with this? I was thinking it might be due to tight tendons in her ankles but I am not sure. ]]> Medical Issues http://mpsforum.com/forums/showthread.php?75405-Knee-pain http://mpsforum.com/forums/showthread.php?75404-Megan-s-irritability&goto=newpost Sun, 13 May 2012 13:30:39 GMT Hi all, Megan has been very irritable and restless in the afternoons lately. She will wake up in a very good, happy mood but as the day progresses... Hi all,
Megan has been very irritable and restless in the afternoons lately. She will wake up in a very good, happy mood but as the day progresses she gets more irritable. By 3 or 4 o'clock pm she is restless, crying, just all together cranky. She seems miserable and I hate it for her. She takes Keppra for seizures which works great but I'm wondering if any of you have seen negative side affects from this? She also takes Tenex(3 times a day) and Valium(10 mg. which we give her in afternoon to try to help agitation...which it doesn't) dr. just prescribed Prilosec in case her tummy is hurting....still irritable. I give her ibuprofen for pain...still irritable. Bowel movements are good...still irritable. Any thoughts? ]]> Medical Issues Melanie http://mpsforum.com/forums/showthread.php?75404-Megan-s-irritability http://mpsforum.com/forums/showthread.php?75403-Nose-bleeds&goto=newpost Sat, 12 May 2012 19:47:43 GMT Do you often go in the room in the morning and find the pillow covered in dried blood?! It happens once in a while with Daniel, but I guess it's now because of Hay fever time. :( Trouble is it had obviously well and truly dried this time because even after washing the stains are still there! :ohno Must remember to start putting cream up his nose to keep it moist and not irritated! :roll:
Do you have a good solution for the sheets? ]]> Medical Issues Elizabeth Schuepbach http://mpsforum.com/forums/showthread.php?75403-Nose-bleeds http://mpsforum.com/forums/showthread.php?75402-Dealing-with-other-peoples-ignorance...&goto=newpost Sat, 12 May 2012 18:47:45 GMT Just need to vent a bit; maybe someone can explain it to me. Why do people feel the need to tell a patient what their opinion is and what they think... Just need to vent a bit; maybe someone can explain it to me. Why do people feel the need to tell a patient what their opinion is and what they think they should do or should have done? Most of the time frankly it doesnt bother me anymore but at times like over the past couple weeks as ive been in-patient for 2 weeks straight (minus 1 1/2 days where i got out between being in-patient from the 2nd shunt placement + lumbar decompression and then being re-admitted by my Neurosurgeon from her clinic in the morning where I opted to go instead of going to the ER and being transfered via ambulance the night before to her hospital due to severe neurologic-radiating pain from upper-mid spine (where the lumbar portion of the LP shunt was threaded up to and placed in) and nerve irritation which radiated in to my low back, hips and L leg. I had swelling from the decompression and shunt placement all around my spine incision and side + abdominal incisions). Anyways since then I cant tell the number of times people have asked why I dont give up on the shunt (really? like what choice do we have? Vision issues? Autonomic issues? Affect on breathing and affect on endocrine systems... I get that people dont understand hydrocephal and especially MPS and the effect MPS has on differing Hydro in our cases from 'typical' pts but why not just look something up before telling another pt what they shoudl or shouldnt do and so you the questioner can realize that shunts are a essential need + have an abyssmal success rate in many patients (regardless of the surgeon) + have unlimited amount of complications... I also find it very frustrating that these same people think they need to continually tell me what I should or shouldnt do with my health? As if I really want to spend 2 weeks in-patient with sorting out how best to program the 2 shunts to avoid the nerve irriration caused by not enough CSF in the location of the spine that we have had to place the proximal (1st part of) shunt catheter and in balancing drainage of spinal fluid to regulate pressure but also leave enough so the catheter isnt rubbing on the dura and nerves... And yet balance over-production of CSF with not enough CSF in the thoracic spine/catheter location? As if any of us do want to deal with all these issues much less people questioning us and our decisions?
Half the time these same people cant take care of their own issues but somehow feel they know best in other peoples care.... so frustrating at times! I know ultimately what matters is I trust in God who is the ultimate healer and I trust completely in my neurosurgeon I guess it jsut fets old defending what I believe is right. I should just ignore people like that but im not very good at it...

How do you deal with people's idiocy? (I dont mind people asking questions I just mind busy-bodies who "know everything".... Thanks.

Erica
www.rarelydefined.blogspot.com ]]> Emotions ericajth http://mpsforum.com/forums/showthread.php?75402-Dealing-with-other-peoples-ignorance... http://mpsforum.com/forums/showthread.php?75401-Leaning&goto=newpost Sat, 12 May 2012 14:40:20 GMT Logan has been leaning to the right while sitting for the past several months. He'll also lean forward. I know this has been discussed before, but I wanted to get your input on it. Hunter families: have you seen this in your kids? Was it caused by or did it lead to scoliosis? Other MPS families: I could use your input too. A lot of times Logan's neurological involvement is much more similar to Sanfilippo than Hunter Syndrome, but he also has the bone issues typical of Hunter. His new wheelchair will have lateral supports, but is there anything else we need to think about? ]]> Medical Issues Robin http://mpsforum.com/forums/showthread.php?75401-Leaning http://mpsforum.com/forums/showthread.php?75400-Chloe...&goto=newpost Sat, 12 May 2012 12:50:43 GMT Chloe just isn't herself, so much to tell, but I am going to get to one main concern at the moment, the last two days every time we give her a feeding she gets the hiccups. Also, since we increased her formula to a higher caloric intake we noticed her saliva is constantly in the corners of her mouth looking like raspberries, not just the usual stringy slobber. I have a stethoscope and her lungs sound clear and air is moving freely, but she has so much crap in her throat, like she drools so much it puddles in the back of her throat until she coughs real hard, which seems to take a long time for her to cough hard. Her teacher came by the other day to visit her, Chloe had to be pulled from school again because of her declingin health, and she said she notices the change. So, Chloe goes to her developmental delay doctor on 5/23/12, what all should I ask. I cry every day for Chloe because I am so scared for her. I dread that she is going to go to bed at night and not wake up. I am scared and it is driving my husband crazy. She is having alot of complex partial seizures and this used to never be an issue..and now it is. Her milk is going into her g-tube slower and slower, I am asking for Reglan when we take her to the doctor, which may be sooner than 5/23/12, I don't know if she needs to wait even that long. She is smiling this morning and relatively happy, dispite the hiccups. Advice!!!!:ohno ]]> Medical Issues jodiekey http://mpsforum.com/forums/showthread.php?75400-Chloe...