Gifted Issues Discussion homepage Forums Twice Exceptional The cause fo the hypotonia diagnosed

Thanks MON. Yes, the doctor is very qualified and she is sending a detailed report about her findng and how she came to it - also a report that I can give the school ... That is a definite plus - a highly qualified and credentialed CHOP specialist has diagnosed him with a real diagnosis.

I just personally wish there were a genetic test. The more research I do on it, though, the more it does fit quite well. The doc mentioned that there's no genetic test for it unfortanately (not for my son's type anyway - I think there are for the two much more serious types).

Yup.. mild or not, it's better to know!

No, that doesn't rule it out... especially the hypermobile type... My son seems to have no skin manifestations and, appparently, that is not uncommon particularly with the hypermobile type.

Oh good luck, let me know how it goes. Does your son have strabimus too (I can't remember)? Apparently that is commonly seen in EDS - something about the connective tissue affecting the eye muscles.

Yes that's my understanding and there can be big ranges of severity within families. it is genetic - chances seem high that you both probably have it.

It's a weird feeling to have the dx ... On the one hand, the whole reason we got to this point was because of the symptoms (albeit generally mild) seemed all related to me and various docs would give reasons for them that didn't seem quite right to me. It also seemed at times like people/professionals in general seemed to think I was perhaps 'off', 'overanxious' - or would 'he's fine - yeah he's not gonna be an olympic star but stop looking for trouble' king-of thing... But I kept thinking, that many of his issues, i.e. hypotonia, hypermobility, strabismus, bruxism, cavities, etc., are related. It was Lori H.'s posts and experiences that made me follow through on the connective tissue clinic recommendation. The neuromuscular doc made the recommendation and gave the referral but didn't make a big deal about it. She was like, "he's fine but you really should probably get those hypermobile joints looked at... But nothing to worry about." I think I was starting to think - oh he really is fine and I am just neurotic and expect too much from him, etc. But then, when I read Lori H's posts and experiences, I realized I have to follow my gut and take him to the connective tissue specialist and also that even if whatever he has is "mild" we still should know what it is.

So, at first I felt kind-of happy about the Dx .... Finally, I wasn't sent off being told "you worry too much, you expect too much. He's fine." Also, I am/was relieved it's this and it's mild rather than something worse. I am just this week after doing research and such starting to get really sad that he has this. It's a weird feeling.

That's refreshing to hear you have a center point to work from.

In skimming the PDF referenced above, it was interesting to see how suggested accomodations align very well with ones you were struggling to get enacted.

KJP and others, Do you know if my son's EDS could be contributing to or causing dysgraphia and dyspraxia symptoms? Or are the two unrelated?

Irena, I am so glad that you stuck with it and found a diagnosis for your son, and I also totally understand the mixed feelings, and how you will feel sad too. It's made me think a bit about whether or not I should look into why my ds is dyspraxic and dysgraphic - and I think that it's just amazing that you were able to find a link through another member of our board here that provided such a vital clue for your own ds - kind of amazing, isn't it?

Best wishes,

polarbear

Irena I doubt that there is a researched connection between dysgraphia or dyspraxia and EDS but I am pretty sure that there certainly is a connection. There is a definite cross over with neurological quirks in EDS and I am pretty sure every one of us wiht a child who has a connective tissue disorder on this board also has a child with a handwriting problem.

My eldest seems to have had less trouble learning handwriting, but that may have been that her literacy skills were so delayed that she was older before anyone expected her to output any sort of reasonable handwriting (because she had nothing to write). On the other hand she has co-ordination issues bordering on developmental co-ordination disorder / dyspraxia.

My second child I am quite certain would have ended up with a (physical/mechanical) dysgraphia diagnosis eventually had I not intervened with her handwriting at the time I did. I do not believe she actually is dysgraphic but a scenario was unfolding between her physical hand problems and her attention issues from ADD that was going nowhere good. This one (according to the OT) has neurological integration in line with her DYS IQ, which is the only reason she can do any of the things she can do with her floppy body.

My youngest is too young to know (she's definitely hypermobile and low tone, but too young for handwriting). She certainly falls over a lot, despite being apparently advanced in gross and fine motor skills.

All my children have gut issues, the youngest and eldest most severe. I think my eldest may be developing dysautonomia.