I have been a bit suspect of a few of the newer posters on here too.PollyKrome wrote:AgreedMervellla wrote:Wed Apr 17, 2019 8:54 amI am used with children who hold their legs in all kinds of weird shapes but that is because my children have a genetic connective tissue disorder.ClassyCat wrote:They really need to get Indie's joints, muscle tone, connective tissue, etc. evaluated. It is not normal to hold you legs straight out in the air with your foot turned out like this. (It looks like her legs are bent, but she was holding them straight out like this. Just hard to get a screenshot.) Normally people hold their legs out with the toes pointed more up because you naturally use your biggest muscle (quad) to hold you legs out. This is especially sad considering how she is always holding her arms wonky too. Add in her eyes and possible concussion/brain bleed and the poor girl is being totally neglected.
I have only seen one other child whose legs looked like Indie’s in her little swimming costume pic, and that was my oldest daughter.
Her muscle tone is so low that despite having very thin legs as a toddler they still looked saggy - like Indies. They looked like that from the minute she was born.
These conditions have all kinds of implications for fine and gross motor control as well toilet training, reflux and a host of other things. It could even be affecting her eyes, as the muscle tone is too low to control eye movement. A low prescription in glasses can make a big difference just to make the eyes less tired and help coordination and concentration. She will need support in school if this is the case, with writing etc.
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I have a rare genetic connective tissue disorder. As do my two children. Mine is a defect in collagen which occurs in first trimester in gestation. Collagen in is 80% of the human body so it affects everything; skin, bone, organ, muscle, brain, eyes, etc.
I don't think their connective tissue disorder is the same as mine. But there are several genetic connective tissue disorders and several inherited autoimmune connective disorders.
With my connective tissue disorder the collagen fragility is half the battle. The defective collagen forces the body systems to speak to each other in a dissociative manner. For instance the gi thinks its telling the brain that there is in invader in the system so the brain arranges for the body to send out certain alerts in a histamine and hormone response because it miscalculated. This is called Mast Cell Activation Syndrome and it cascades autoimmune disorders through the body. Mine is telling my body that the nerves are enemy so it attacks the nerve lining in much the way of MS. Now I get ivig infusions every three weeks for the rest of my life.
With my connective tissue disorder there is what is known as a trifecta so we all have dysautonomia in which we stand and the blood can't be pulled out of the legs so we get light headed and oxygen does not get to the lungs and brain as it should. Its more than low blood pressure so that's a separate problem that needs addressed.
As I said I don't think the little have my connective tissue disorder but I do believe they have one in addition to the TtoT Syndrome they were born with. If you read up on long term survival issues of TtoT you'll see a few of the issues that the tinys deal with.
I think the heavies have different genetic disorders as is shown with their facial issues, their thinking and speaking problems, some rage and inability to manage their emotions.
We all know they are individuals and they no doubt have some shared disorders and some individual disorders. Although I share my genetic disorders with my children it manifests in different manner with each of us and we present with different joint and skeletal issues.
These poor ferals are already fighting genetic and health battles and then they have ongoing stressers from their dysfunctional family. I grew up in a large family with a great deal of dysfunction and its like waking up and going to war everyday. Tuck those pigtails under the helmet because you're going to war again today. From this I recieved complex ptsd which we see signs of the ferals dealing with.
And as we all know stress feeds the autoimmune system.
As everyone here I do wish they'd get these feral children into genetics so they can begin to get their individual needs met - separately.
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On a side note I'm considering taking a break from this forum. My sense is that it is being overrun by KADS who are posing and posting multiple times to build their star level up. They seem to do this by repeating someone else's post and changing a few words. I also feel that they try to steer the course of this group creating diversion and not replying to some posters. In my opinion they are changing the direction of this forum. We've seen this happen in the past by one or two but this seems to be a larger quantity of posers.
Thank you for sharing about your connective tissue disorder. Several years ago I was diagnosed with an autoimmune connective tissue disorder. It was hell getting to that diagnosis! Thankfully I have been able to keep my flare ups at bay with a lot of changes to my lifestyle. I also grew up around a lot of dysfunction and unfortunately a lot of that carried into my adult life. The stress that was causing my body is what really sent my flare ups into overdrive. I can only imagine what these girls will be dealing with throughout their lives.
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