http://mpsforum.com/forums/ An Internet Gathering Place for MPS and ML Families en Fri, 10 Sep 2010 14:12:39 GMT vBulletin 60 http://mpsforum.com/forums/images/misc/rss.png http://mpsforum.com/forums/ http://mpsforum.com/forums/showthread.php?73143-services-in-TENN&goto=newpost Fri, 10 Sep 2010 13:40:22 GMT I was just checking the Tennesee Financial and Care Services topic , nobody has posted here yet. If you are from Tennessee and know of some... I was just checking the Tennesee Financial and Care Services topic , nobody has posted here yet. If you are from Tennessee and know of some services, could you please post and give me some links? Thank You! I'm gonna do some internet searching and If I find anything, I will post too. ]]> Tennessee Val http://mpsforum.com/forums/showthread.php?73143-services-in-TENN http://mpsforum.com/forums/showthread.php?73142-Finally-Back&goto=newpost Fri, 10 Sep 2010 05:14:28 GMT So I have been away forever, since Blake's diagnosis and the end of Shawn and I's relationship. My life has been choas ever since and I'm just trying to find away to balance and keep my head above water as I figure out this whole single parent thing. Respite has FINALLY kicked in and that has been helpful, and Shawn also takes the boys, but there are still issues there and we have decided that even though we will no longer together we will co-parents the best we can. We are going to Minneapolis for appts in November.
Some good news......We are going to Disneyworld in January with make a wish, and we could not be more thrilled for Landon, we're all so excited.
The boys are doing well, no change with them at this time, Landon just started school again and this year he riding the bus and absolutely loving it. I have been giving him melatonin at bedtime and it does seem to be help somewhat, hopefully it stays that way. Blake is starting to become mobile and it's bittersweet...I'm glad to see him growing and hitting his milestones, but I know I'm losing my last baby and I really don't know how I'll manage once they are both fully mobile, it's actually quite scary to think about.
Hope everyone is doing well, you have all been in my thoughts and I hope I can "show up" around here more, this site is a very good source of support and that is something I would definately not turn down right now :) ]]> Emotions ashriggs http://mpsforum.com/forums/showthread.php?73142-Finally-Back http://mpsforum.com/forums/showthread.php?73141-Respirdol&goto=newpost Thu, 09 Sep 2010 15:25:04 GMT Lucas started Respirdol yesterday...does anyone have any experience with it??? Lucas started Respirdol yesterday...does anyone have any experience with it??? ]]> Medical Issues jillvaldez http://mpsforum.com/forums/showthread.php?73141-Respirdol http://mpsforum.com/forums/showthread.php?73140-IDK-what-s-wrong&goto=newpost Tue, 07 Sep 2010 19:46:32 GMT But there is something going on with Ian. Again. I feel like I never have anything good to post. . I hate that. Lately all he has been doing is... But there is something going on with Ian. Again.

I feel like I never have anything good to post. . I hate that. Lately all he has been doing is losing skills and his body seems to be going down hill, and there hasn't been any recent changes in his condition, diet, or meds. Except I added vit. D3 last week to his morning regimen.

It seems like since he had the big seizure episode in April he just went KAPUT. ERG.

Pre-April he was quiet, calm cool, and collected. He didn't have any major issues and was on a daily regimen of supplements mainly for stomach, deficiency, and sleep.

Now we are back to what seems like the terrible two's. And do you guys remember how terrible our terrible two's were? Ours was AWEFUL. 10 second attention span, running through the house, never stops moving, never sleeps, have to hand feed, bathe, etc.

Ian lately has been taking off his diaper, and it's been YEARS since I have had to clean up a poopie mess out of the floor because he took his diaper off and stepped in it (or worse, back then was playing with it!)

We have worked our BUTTS off learning these skills, learning to live day to day, learning to bathe, focus, and pay attention, communicate,eat properly, learning "how to be" and now over the course of 8 months it's all gone. JUST LIKE THAT. That is 4 solid years of work RIGHT DOWN THE DRAIN.

All the hard work I put into going to his school and teaching the teacher, the time I spent stringing beads, learning PECS, and researching teaching techniques for him, all that time spent WASTED. GONE.

Today Ian got sent home from school because he barfed. I am at my wits end being alone for 4 days with him. He has since learned to take off the safety gate we rigged up for his room (he has no door, we took it off and use a cable tie to tie the end of the gat up so he cant pull the lever and open it). We are back to "if he can't figure it out, he will force his way through it).

He also just poo'd in the floor like 15 minutes ago.

He has no "listening" abilities any more - no matter how much I redirect him, he won't stay. Pre april, he would do whatever I told him to, for at least 10 minutes.

He has been up since I dont know when, but sometime before 5am and it's not even phased him. He didn't get to sleep til after midnight last night.

I dont know what to do - AND

I HATE THIS!! ]]> Day to Day Issues with MPS/ML Shellym0922 http://mpsforum.com/forums/showthread.php?73140-IDK-what-s-wrong http://mpsforum.com/forums/showthread.php?73139-Thickening-Mitral-Valve&goto=newpost Tue, 07 Sep 2010 15:48:12 GMT OK MPS Crew ... Dani's Mitral Valve is still thickening. Just got a call from the Doc and he wanted to know if and when they do surgery on our kids. He has echos from birth on and says it is nothing critical but is amazed that it did not show up until after her transplant. I'm looking for criteria if anyone has specifics. ]]> Medical Issues http://mpsforum.com/forums/showthread.php?73139-Thickening-Mitral-Valve http://mpsforum.com/forums/showthread.php?73138-The-screaming-has-stopped.......pretty-much-anyway&goto=newpost Tue, 07 Sep 2010 15:40:29 GMT Hi everybody..........Ok.......he is better.....:frown:...three visits to the Dr.......:ohno...after the first one he upped his meds to where he was... Hi everybody..........Ok.......he is better.....:frown:...three visits to the Dr.......:ohno...after the first one he upped his meds to where he was out for about 3 days..:)....then I went down on the meds myself.........then we went back and he took away most of his meds.but added Valium and it calmed him down...........to wein him off of some of the meds..........and we went back and he added a few new ones and another at night for him to sleep better. He has slept the last 3 nights real well, took a little while for him to go to sleep but he stayed asleep and seemed to sleep better. He had his 28th Birthday 9/1 :birthdaycake ........his BD was horrible..........so we decided to have a B/D week........one day he had pizza and the next we got a lot of ice cream..........some clothes..........DVD's............if I have posted any of this stuff please forgive me........I'm on facebook also and I forget who I tell what..........with no sleep I'm dangerous!!!!!!!! :rotfl ]]> Day to Day Issues with MPS/ML Karla http://mpsforum.com/forums/showthread.php?73138-The-screaming-has-stopped.......pretty-much-anyway http://mpsforum.com/forums/showthread.php?73135-Seizure-control-biochemically-super-article!!&goto=newpost Sun, 05 Sep 2010 12:07:45 GMT I thought I would post this excellent article for controlling seizure naturally. There is so much good info in here. I shared it with one of the... I thought I would post this excellent article for controlling seizure naturally. There is so much good info in here. I shared it with one of the posts on FB, but I think I needs to share this here too. Much of this has helped Jesse so much, but I had to find it over a course of many different articles in the past. This one has it all it seems!!

http://www.drlwilson.com/articles/epilepsy.htm

Just a note.. at th ebottom are links and you can go into information overlaod when looking at them once you get involved, but really there sis so much good info on foods and vitamins and minerals etc. it's a good page to bookmark for references to look at periodically down the road. Basically a real study and way of life here. ]]> Forms of Treatment PattyT http://mpsforum.com/forums/showthread.php?73135-Seizure-control-biochemically-super-article!! http://mpsforum.com/forums/showthread.php?73134-I-found-bodysuits!!-Up-to-5T!!-More-sizes-coming-soon!!&goto=newpost Fri, 03 Sep 2010 23:26:11 GMT Here is the website: Essential Whites (http://www.essentialwhites.com/default.aspx). This is not a special needs company so the prices are... Here is the website: Essential Whites.
This is not a special needs company so the prices are reasonable: for the sleeveless - around $8 each when you buy 4.
The 5T are out of stock right this minute - but coming this month AS WELL AS SIZE 6.
If the size 6 ones sell well, they will continue adding larger sizes one at a time.

I feel very optimistic about this. If you know anyone who would like larger affordable bodysuits, please pass this info on to them. ]]> Day to Day Issues with MPS/ML lauraeden http://mpsforum.com/forums/showthread.php?73134-I-found-bodysuits!!-Up-to-5T!!-More-sizes-coming-soon!! http://mpsforum.com/forums/showthread.php?73133-I-just-realized&goto=newpost Thu, 02 Sep 2010 20:34:21 GMT that I havent updated after the Frambucamp :-) Well I had a GREAT time as allways. On Frambucamp every participian (sp?) gets a helper that... that I havent updated after the Frambucamp :-)

Well I had a GREAT time as allways.

On Frambucamp every participian (sp?) gets a helper that will be taking care of you through the camp. The helpers are students, some are physiotherapistudents, med. students, nursestudents.

The first I met there was the campleaders, and they was contacting my groupleader (we were divided in 3 different groups, red, green and blue). I was in red group, the best group of course! When the groupleader came he also brought a helper, and he was from USA, Chicago. So I had to talk english the whole week. Cool! They knew that I was talking english, so they decided that I could have the american. The groupleader asked if that was ok, I said of course.

Monday was a get to know day.

Tuesday my group had the responsibility for the show that evening. I was singing duet with a helper. We sang a norwegian song.

Wednesday our group made a newspaper and "TVnews".

Wednesday evening we got a message that the breakfast on thursday was going to be a hour earlier because of the trip to Oslo. and it was very important that we were on time for breakfast, because we were going to meet in the lecturehall for some information (rules and stuff like that).
10 o'clock we sat and waited for the campleaders to come, they were late... When they came they asked if we knew anything about the waterleak that was happening downstairs. We didnt know about it. Suddenly a helper came with a guitar (many of us was thinking "are you going to bring the guitar to Oslo?), and after him 3 guys came: A1! (I dont know if you know this boyband, I think our UKmembers knows them) One of the guys are norwegian and the other to are from England. The helper that came with the guitar was brother of the norwegian. (we didnt know this until afterwards).
Everyone got their autographs and everyone also got photo with them. I'm not a big fan of them, but it was huge to meet them.

After A1 left, we took the bus to Oslo, for shopping and other stuff.

Friday my group was going to have a walk, but because alot of rain we did just walk to a tipi.

Friday evening there was Hawaiiparty! Dancing.

Saturday was the last day, and everyone could choose between 3 different groups: music, drama, dance and creative group. I chose music. And sang Lean on me and Majesty.

Sunday, we cried and cried and had to say goodbye to everyone.

Everyone have had a great week.

Love from Vibeke ]]> Emotions Vibe http://mpsforum.com/forums/showthread.php?73133-I-just-realized http://mpsforum.com/forums/showthread.php?73132-Feeding-chair&goto=newpost Thu, 02 Sep 2010 15:40:46 GMT Hi,

I'm wondering what you would recommend and/or are using for a feeding chair.

Olivia is almost 8 years old (Sanfilippo,) 60 lbs., finger feeds (needs a tray) and unable to sit still (NEEDS A TRAY!)

We are leaning toward the Special Tomato Large MPS system.

I thought I would see what other people are using before we make the commitment.

Thanks,

Jill ]]> Day to Day Issues with MPS/ML http://mpsforum.com/forums/showthread.php?73132-Feeding-chair http://mpsforum.com/forums/showthread.php?73131-Can-I-be-right-about-congestion....&goto=newpost Thu, 02 Sep 2010 14:09:32 GMT Just got a new worker....but she smokes. Doesn't smoke around us but can the smell of cigarettes on clothing cause our kids to have congestion problems???? Nathan has been sick with his breathing about 3 days after the worker being here. I should have suggested a non-smoker but one of the issues I didn't think about. ]]> Day to Day Issues with MPS/ML lovebugs_mom http://mpsforum.com/forums/showthread.php?73131-Can-I-be-right-about-congestion.... http://mpsforum.com/forums/showthread.php?73130-Muscle-loss&goto=newpost Thu, 02 Sep 2010 04:47:54 GMT No one seems to know anything about a tendon transfer surgery which is fine but maybe othersw can atleast chime on do your kids have muscle loss at... No one seems to know anything about a tendon transfer surgery which is fine but maybe othersw can atleast chime on do your kids have muscle loss at their thumb or wrists from carpal tunnel? This woud be most noticeable at the thenar prominence where the fatty padding is below ones thumb... Just curious trying to figure out if it is common in MPS (doesnt seem to be) or if is purely a result of very delayed time until surgery was done on my hands for the carpal tunnel the first time 8 years ago... Thanks..!! ]]> Medical Issues ericajth http://mpsforum.com/forums/showthread.php?73130-Muscle-loss http://mpsforum.com/forums/showthread.php?73129-adipose-deficiency-in-MPS-diseases&goto=newpost Wed, 01 Sep 2010 23:27:19 GMT I was researching the adipose deficiency in MPS disease and thought everyone would like to see the study I found. Basically our kids need a high... I was researching the adipose deficiency in MPS disease and thought everyone would like to see the study I found.
Basically our kids need a high fat/simple sugar diet for counteract the energy imbalanced caused by the disease.
This diet corrected the adipose deficiency in mice. I thought it would be helpful because as our kids get older I have
noticed their arms and legs get thinner. They cannot store fat like normal so their bodies steal from the muscles for energy. This imbalance becomes greater and greater until the body cannot steal from anywhere and cells start to die.
I think that looking at diet changes to battle this would be helpful. I brought Matthew to a nutritionist to help with
adding to his diet to maintain his fat stores. We are starting today. I have already seen an improvement from the
extra oil supplements I have given Matthew over the past year. His arms and legs are looking less thin.

I would love to get some comments on this article from some experts on the subject

http://journal.shouxi.net/html/qikan...59_412095.html ]]> Forms of Treatment kbuckley12866 http://mpsforum.com/forums/showthread.php?73129-adipose-deficiency-in-MPS-diseases http://mpsforum.com/forums/showthread.php?73128-Any-use-Felene-Melts&goto=newpost Wed, 01 Sep 2010 19:16:29 GMT Just been prescribed Feldene (or possibly spelt Feldine - not got as yet) Melts 20mg - one into the buccal cavity at night to give 24 hour pain... Just been prescribed Feldene (or possibly spelt Feldine - not got as yet) Melts 20mg - one into the buccal cavity at night to give 24 hour pain relief for Jasmins hip pain.

Anyone else come across or use Feldene Melts 20mg? Is a 'melt' that goes into cheek and pain relief for 24 hours which is rather an amazing thought -- hope to get them tomorrow! ]]> Medical Issues Ria http://mpsforum.com/forums/showthread.php?73128-Any-use-Felene-Melts http://mpsforum.com/forums/showthread.php?73127-Hydrocephalus-survey-please-read!&goto=newpost Wed, 01 Sep 2010 17:19:22 GMT There seems to have been many recent diagnoses of hydro in our kids and lots of questions surrounding it. I am a hard data person so my first... There seems to have been many recent diagnoses of hydro in our kids and lots of questions surrounding it. I am a hard data person so my first instinct is to gather data and share it. I created a survey that I'm hoping as many of you as possible will take, no matter what kind of MPS you or your child has, your or your child's age or experience, etc. I hope no one is offended by these questions, I'm just hoping to give us all the most information possible! When I've gotten lots of responses, I'll post the results.

http://www.surveymonkey.com/s/W6PB7HM ]]> Medical Issues Mom2Case http://mpsforum.com/forums/showthread.php?73127-Hydrocephalus-survey-please-read!