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I can't help but think our issues are connected

Posted by on Mar. 22, 2013 at 9:31 PM
  • 14 Replies
I'm starting to believe that my issues and my sons are related. We both have hypermobile joints among other things. Someone told me I should look into Ehlers-Danlos Syndrome Hypermobility Type. It actually fits both of us really well. How do you bring it up to a doctor that you think more is going on than your child is diagnosed with? I don't want to sound crazy but I feel like we are missing a piece to the puzzle that would explain his wide array of issues. He has had genetic testing but no one has looked at the more rare conditions or even mitochondrial disorders.
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by on Mar. 22, 2013 at 9:31 PM
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by Dawn on Mar. 22, 2013 at 9:41 PM

I really think you should do it. People come across diagnoses by chance and realize that they may fit. I recommend sharing the source maybe with the doctor. You have to realize that not all doctors are familiar with every diagnosis out there, and it is why he might not have been tested for the rare kinds.


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by Chelle on Mar. 22, 2013 at 11:22 PM
Its hard to do, but if you have a Dr you really trust who sincerely listens to you, sit down with them and tell them your thoughts. Originally we brought mito up to our last pedi and he agreed with us. Then our specialists brought it up so I let them know we started the process with our pedi. Now they are all confident that's it. I was afraid at first to bring it up, but I'm glad I did. :)
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by Amanda on Mar. 23, 2013 at 12:01 AM

Good luck!

by on Mar. 23, 2013 at 12:12 AM
by Silver Member on Mar. 23, 2013 at 12:16 AM

 You will always be your child's best advocate.  Bring it up and hopefully the doctor will listen.   If not, find someone who will. Good luck!

by Darby on Mar. 23, 2013 at 8:20 AM

Good luck mama!  Hugs!

by Silver Member on Mar. 23, 2013 at 8:59 AM

Id mention it... See how the test and rule out ask if it is something they would consider since you feel it may be a good fit and if they give you a good reason to rule it out, or not, then move forward. 

I like to open with a joke.. Like "im nit a dr, i dont even play one on tv, BUT, i was looking around on the internet and this came to my attention.  I certainly know im nit a dr, but what are your thoughts.... " 

I think that conveys that you know you have no medical training but you are so vested in fgiuring this out that you have some ideas. 


by Bronze Member on Mar. 23, 2013 at 9:49 AM
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I had originally typed my doctor a message and then never sent it. Here is what it said:

I'm going to sound completely crazy but want to put this out there. My 5 year old son sees a neurologist and a host of other specialists due to hypermobile joints, neurological issues, psychological issues, hypotonia, etc. They've tested him for numerous things and so far he has diagnoses relating to multiple systems of his body. He was born a 36 weeker and spent 4 weeks in the NICU unable to eat orally, as well as 8.5 weeks on oxygen due to respiratory distress and tachypnea. I understand that his situation was highly unusual. They felt he may have a genetic condition but the tests they ran came back normal. It was mentioned to me that I should look into Ehlers-Danlos syndrome hypermobility type for him, and really it would explain 99% of his issues. I also noticed it would most likely not come back positive on a genetic test so was going to ask his neurologist if that would be something to look into or a mitochondrial disease. We will be touching on some of this at Childrens Hospital of WI-Milwaukee's neurogastroenterology, motility, and autonomic disorders center this summer.

I have been told that I have hypermobile joints as well. I can dislocate my fingers, touch my thumb to my wrist, my knees pop when I walk, my jaw pops whenever I yawn or open my mouth (I've gotten good at hiding it and have NEVER mentioned it to anyone but my husband), I used to bend my body backwards and could put my hands on the floor behind me with my feet still planted on the ground, do the splits without any practice, etc. I have coloboma of the optic nerve, have had vitamin D deficiency, chronic pain, mild arthritis in my back, three ankle surgeries partially due to ligament laxity, now burning pain in my legs, etc. Typing this makes me feel very old.

I know you can't answer this, but is there a chance that maybe we are missing something that is linked genetically, which is why my son has so many of the same problems? I just feel like there is a piece of the puzzle missing that would finally give me a reason for all these different things happening. I'd rather forget about everything and just go on with life, but if we are missing something and it would explain why my son is the way he is, I thought it was at least worth mentioning.
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by on Mar. 23, 2013 at 11:08 AM
Please go to Dr Kendal Stewart . Com He is a Dr in Austin Texas who specializes in this. His website has graphs and detail explanations of how all this works together. It's very interesting and you can print it off and give this info to your Dr. You are not crazy you are absolutely right! Now start digging and find someone to help you.
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by on Mar. 23, 2013 at 4:20 PM

tell his DR you want these certain and rewlated evals and tests or the neuro

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