No this isn't a post about those happening together, those are 2 different topics.
Potty Training is doing awesome, she'll even go by herself sometimes during the day as long as she knows I'm waiting at the bottom of the steps. She won't go by herself in the evening, but I think that's partly because she can't reach the light switch. I am going to get one of those dealie-bobs that makes it so she can. Other than nap & overnight she doesn't wear a diaper at all. she still won't poo in the potty & as much I can't wait for that day I won't rush her yet.
As for discipline I think as a parent we have an idea of how we want to discipline, but you won't know for sure til you know the temperament of your child. Right now we are tying the star system. I've got a dry erase board & when she does good stuff she gets a star when she does naughty stuff she looses one. If she makes her goal for the day she gets a treat at the end of the day. She also has one chore on there too that she needs to do (no stars for doing it). It's easy stuff like picking up a room of all her toys. The rewards for getting her goal of stars are little things like watching some tv before bed or painting or stuff like that.
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
14 November 2008
30 October 2008
Poland's Syndrome Stuff
It seems that the main search that brings people here is Poland's Syndrome, but yet I don't end up posting as much on that as I do the EDS. I think at dx & during the pre-teen/teen years people want to know they aren't alone with PS & want info. So I will try to make a effort to help y'all out.
I was dx'ed at birth, my mom is still trying to decide if it's her fault or not, honestly as an adult I don't think it's anyone's fault. I do not blame anyone for my PS, it's just something that is. As a baby/toddler/young kid I really didn't feel or act different than any other child except for a few things. I obviously didn't crawl, between the PS & the EDS I think that's a given. My handwriting was the worst in the class, I have PS on the right & am a righty. So for parents don't blame yourself, it's wasted energy & there is no reason your young child can't so anything anybody else is doing.
As for teens I got nothing for the guys, just for the girls as far as how to blend in. For you girls go buy a chicken cutlet, ok not a real one but one of those fake silicone boobs you can stuff in your bra. (They really do remind me of a piece of uncooked chicken.) You can pick up a cheap pair on Amazon or eBay, you don't need the fancy ones, just the $20-ish ones will work fine. Your boob size will change a few times so no sense in spending a ton just to toss them out in a year. Also if you're wearing an opaque bra you don't even need them to match your skin. These things last for about 2-3 years. Oh, buy the set, not the singles, that way you always have a back-up boob incase you need it. When/if you buy a new set keep the old ones, you can stack the older-smaller one on the new larger one if you grow again & that way don't have to rush to get a new set right away.
As for current stuff we are trying to help out one of my fingers. The middle finger on my right hand has curved a lot. It was a bit wonky from birth, but it's gotten really wonky as I've aged. I'm not sure how much is due to PS & how much is due to EDS or if it's just the freaky mix of having both. I got a splint to sleep in to help out.
25 September 2008
Being a EDS Mom
There are things as a mom that are different for me than for those who don't have EDS. That's not to say the emotions I have aren't the same or similar to those who have other genetic issues.
I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.
My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.
I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.
Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.
I was walking my daughter home after school yesterday & the whole way I could feel her wrist slip in & out of joint. I don't hold her hand because of this or her elbow or her shoulder, but rather I let her hold a few of my fingers. That also helps so that if she does that kid thing where she just drops to the ground because she doesn't want to keep walking or go the direction we are going she isn't going to end up with a dislocation & neither will I.
My daughter is 3, I can't carry her anymore. She's just over 30lbs & I stopped carrying her for the most part once she had walking down pat. It causes me too much pain to carry her. I almost never pick her up anymore because it's not really an option anymore. I only do it if it's because there is a danger in not doing so.
I watch her move a lot. Looking at how she is using her body, seeing her do things that are EDS & having a sadness in my heart from it.
Plus there are the odd things at this house. Like say the fact everyone owns at least 3 weeks of clothing, including sock & underthings, because our washer & dryer are in the basement & there are periods where I can't go down those steps to wash clothes. Or the fact I don't walk down steps, I slide down on my butt. Or the fact some days I can barely walk from one room to another. Or the fact on bad days I drink almost nothing so that I won't have to walk up stairs to the bathroom. This is what my daughter thinks is normal.
06 September 2008
Digesting Ehlers-Danlos
So I've just spent the last few days just digesting the info that I do have H-EDS. It kind of funny to me that I need to digest it. I was pretty sure before the appt & was fine thru the appt, but I guess it took a few days to really sink in. I know it doesn't mean I'm any more messed up than I already was, but it does mean I'm not going to be getting better. I spent a bit of yesterday crying, not a sobbing mess, but just letting out a few tears.
I think one of the hardest parts of all this is my sister. She died about 2 years ago. Right now I could really use her & this is the first time since she died that I need my sister. There were plenty of times I wanted her & missed her, but this is the first time I've really needed her. We could be going thru this together, but instead I'm alone. She had EDS, but of course we didn't know. She was in horrible pain for so very many years. No one took her seriously. My mother thought it was depression (which my sister had as well). My father thought she might be a drug addict, why else would she be so desperate for pain meds. I though she had pain, but I also thought she had stress & depression which made the pain worse & I thought she liked the attention of being sick. I guess in retrospect we were all a bit off the mark. Her docs thought she had pain, but really it couldn't be that bad. They gave her Percocets & she took Tylenol on top of that. She was very under medicated & due to the acetaminophen she was piling in she killed her liver, then aspirated her own vomit & died. In my opinion EDS killed her. If anyone had noticed, or realized this sooner maybe she'd be here, but she's not & I can't put words on how much I miss her right now.
I think one of the hardest parts of all this is my sister. She died about 2 years ago. Right now I could really use her & this is the first time since she died that I need my sister. There were plenty of times I wanted her & missed her, but this is the first time I've really needed her. We could be going thru this together, but instead I'm alone. She had EDS, but of course we didn't know. She was in horrible pain for so very many years. No one took her seriously. My mother thought it was depression (which my sister had as well). My father thought she might be a drug addict, why else would she be so desperate for pain meds. I though she had pain, but I also thought she had stress & depression which made the pain worse & I thought she liked the attention of being sick. I guess in retrospect we were all a bit off the mark. Her docs thought she had pain, but really it couldn't be that bad. They gave her Percocets & she took Tylenol on top of that. She was very under medicated & due to the acetaminophen she was piling in she killed her liver, then aspirated her own vomit & died. In my opinion EDS killed her. If anyone had noticed, or realized this sooner maybe she'd be here, but she's not & I can't put words on how much I miss her right now.
04 September 2008
It is Ehlers-Danlos
Ok, so how did the appt go? Well I am the type who shows up early for anything & my letter said to be there at noon so I was there at 11.30, when I get there they tell me I didn't need to be there til 12.30. So I went down to the subway (it's not a real subway, it's just a little underground mall) & got a bagel & juice since I had forgotten to eat before I left. I got a good spot to sit & eat & read my book. I checked out the medical supply store there & felt like a kid in a candy store, even though it wasn't very big the plethora of wondrous things was astounding. Then I headed back up & checked back in & grabbed a seat.
Then I waited, waited, waited & waited. Finally my name was called. The woman who I saw the the geneticist's PA or something, I didn't ask her title. She did the family tree & did my height & weight & asked a bunch of questions. I didn't know the age of my grandparents when they died, but was able to make guesses that turned out to be within a few years of right so that was good. (Handy tip find out how old people are or were when they died before you go.) I gave her the family symptom sheet I had made at home. Then I went back to the waiting room where I prepared to grow old & die. At about a half hr later I got called back to meet with the geneticist.
I really had some butterflies going at that point & went back. We met in his office & the second I shook his hand I felt much calmer. His pic on the Mayo site made him look a bit formal, but he in person has a welcoming face & a friendly manor. I told him that I have Poland's & said I didn't know if the disparity between my sides would effect any testing & that side-by-side comparison of any joints would not be able to be done. I asked if he could tell me really quick if there were any updates on Poland’s & no they still hadn’t figured that out. He disagrees with the clot theory & thinks there is a genetic component. The first question from him was why I was there now. What did I want from this appt. I told him was there now because I went without insurance for most of my adult life & had insurance now. I told him I was running in to problems with pain & with my joints dislocating more often. I told him I wanted to rule out V-EDS & Marfan's & if we could rule in or out EDS & if in, then what type. I told him I have 3 children & I want to know for them. Seemed that those were good answers & we moved on. He asked about my joints & I showed him a few hand tricks & he said that I wouldn't need to change in to a gown unless I would prefer that. He said he would be able to tell me if I had EDS & should be able to type it. I kinda grossed him out with pulling my finger til the joint at the base separates (that, it turns out is a full dislocation). He asked if I was working & I told him I couldn't. He asked a ton of things about me & the rest of the family & ask if there were more family in the area, but there aren't. He checked my upper chest & skin stretch, plus my joints & how I move when I walk & my scoliosis. We talked about how my symptoms affect me & my life. He explained about the types of EDS & then told me that I do have EDS. I have H-EDS, or by it’s older name EDS III. We talked a bit about that & I asked if the collagen was defective, lacking or both. He said right now they don’t know for sure. He said his thinking about H-EDS is that it may be 2, 3 or more types of EDS being grouped as one. That for some families it may be a lack of collagen or for other families it’s another set of genes & they have defective collagen. I did ask if there was any other connective tissue disorder it could be or anything else it could be. He said no, I have EDS, he said it could be possible that my family is C-EDS, but with only me to examine he felt my symptoms only fit H-EDS.
I then asked about how old my daughter would need to be to be seen. He said some docs who aren’t as experienced my say there is an age children must be, but he feels confident /comfortable seeing kids of any age. I said I would want her seen before she was school age so I along with her pediatrician can formulate anything we need to do for school. He does not treat patients, so I won’t see him again until my daughter goes or if my mom ever moves out here & needs to be dx’ed.
I am kind of still wrapping my head around this, I know I knew going in that this would be the outcome, but that doesn’t make it easy to accept.
Then I waited, waited, waited & waited. Finally my name was called. The woman who I saw the the geneticist's PA or something, I didn't ask her title. She did the family tree & did my height & weight & asked a bunch of questions. I didn't know the age of my grandparents when they died, but was able to make guesses that turned out to be within a few years of right so that was good. (Handy tip find out how old people are or were when they died before you go.) I gave her the family symptom sheet I had made at home. Then I went back to the waiting room where I prepared to grow old & die. At about a half hr later I got called back to meet with the geneticist.
I really had some butterflies going at that point & went back. We met in his office & the second I shook his hand I felt much calmer. His pic on the Mayo site made him look a bit formal, but he in person has a welcoming face & a friendly manor. I told him that I have Poland's & said I didn't know if the disparity between my sides would effect any testing & that side-by-side comparison of any joints would not be able to be done. I asked if he could tell me really quick if there were any updates on Poland’s & no they still hadn’t figured that out. He disagrees with the clot theory & thinks there is a genetic component. The first question from him was why I was there now. What did I want from this appt. I told him was there now because I went without insurance for most of my adult life & had insurance now. I told him I was running in to problems with pain & with my joints dislocating more often. I told him I wanted to rule out V-EDS & Marfan's & if we could rule in or out EDS & if in, then what type. I told him I have 3 children & I want to know for them. Seemed that those were good answers & we moved on. He asked about my joints & I showed him a few hand tricks & he said that I wouldn't need to change in to a gown unless I would prefer that. He said he would be able to tell me if I had EDS & should be able to type it. I kinda grossed him out with pulling my finger til the joint at the base separates (that, it turns out is a full dislocation). He asked if I was working & I told him I couldn't. He asked a ton of things about me & the rest of the family & ask if there were more family in the area, but there aren't. He checked my upper chest & skin stretch, plus my joints & how I move when I walk & my scoliosis. We talked about how my symptoms affect me & my life. He explained about the types of EDS & then told me that I do have EDS. I have H-EDS, or by it’s older name EDS III. We talked a bit about that & I asked if the collagen was defective, lacking or both. He said right now they don’t know for sure. He said his thinking about H-EDS is that it may be 2, 3 or more types of EDS being grouped as one. That for some families it may be a lack of collagen or for other families it’s another set of genes & they have defective collagen. I did ask if there was any other connective tissue disorder it could be or anything else it could be. He said no, I have EDS, he said it could be possible that my family is C-EDS, but with only me to examine he felt my symptoms only fit H-EDS.
I then asked about how old my daughter would need to be to be seen. He said some docs who aren’t as experienced my say there is an age children must be, but he feels confident /comfortable seeing kids of any age. I said I would want her seen before she was school age so I along with her pediatrician can formulate anything we need to do for school. He does not treat patients, so I won’t see him again until my daughter goes or if my mom ever moves out here & needs to be dx’ed.
I am kind of still wrapping my head around this, I know I knew going in that this would be the outcome, but that doesn’t make it easy to accept.
02 September 2008
Tomorrow
It's the "big" day. I go to the geneticist. I've been spending the day making sure all my paperwork is filled out & making sure I have all my notes from when my mom & I did a EDS related family history. I still have to make a list of questions I have & note a few "odd" things, like all the male babies in out family don't grow for 6-12 months starting around 6-9 months old. No clue what that's about, but every single male, even out to 2nd degree cousins & this is 3 generations of data. Will be interesting to find out if that is anything. So I'll be working on my question list for the appt for the rest of the day. If anyone has any questions they can think of let me know!
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