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Raising Special Needs Kids Raising Special Needs Kids

New, undiagnosed- when is enough?

Posted by on Aug. 7, 2012 at 5:23 PM
  • 21 Replies

Hi everyone! 

Just joined this group, trying to get some perspective from others that may have been in my shoes, or are currently. My son just turned one, and has a great team of doctors. However, he is undiagnosed, and everyone seems set on finding what the cause of his issues are. 

He looks perfectly normal. In fact- let me share my handsome boy ;-)


No huge red flags that would help with his diagnosis. But- obviously, he has a tracheostomy. He has SEVERE laryngomalacia, failure to thrive (until trach was placed) and hypotonia. He is about to have his trach removed as he has outgrown the laryngomalacia. He is also developmentally delayed. 

His doctors insist that there has to be an underlying issue we're missing, and want to find out. We have seen TWO geneticists, one looked at him and said testing was unnecessary, sent us on our way. Second actually did chromosomal testing, which came back with nothing out of the ordinary. 

We now have a consult with GI, and referrals to see a neurologist and developmental specialist. 

We have weekl PT/OT/Speech/feeding therapy sessions, and his therapists have me in tears each week because I am so proud of the progress he's making. I asked them if his treament would be any different if there was a diagnosis- which it would not. He either needs it or he doesn't, the reason doesn't matter.

My question is this- when is enough? I do want to know why my son has these issues, but mostly just for selfish reasons, I have a habit of kicking myself for not eating exactly as ordered during pregnancy, or thinking if I spoke out more during delivery, something could have been avoided, and basically make it my fault. So having a diagnosis MAY stop that (if it isn't), but it wouldn't change his treatment. If it comes down to having super invasive tests, just to get a diagnosis, is it worth it??

by on Aug. 7, 2012 at 5:23 PM
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Replies (1-10):
CreziaMommyTo2
by on Aug. 7, 2012 at 5:27 PM

my friend went through 7 years undiagnosed and finally gave up.  she put herself through hell.  he is totally typical.

take what you can get now, and see where that goes... if in a year there is no change fight again

i.heart.myboys
by on Aug. 7, 2012 at 5:42 PM
Oh honey do not blame yourself. Sometimes we don't always know what is going on. I know my placenta stopped working so that's what caused my son's issues. He has Spastic Quadriplegic Cerebral, high muscle tone, laryngomalacia (had surgery), trachiamalacia.
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sammygrl77
by on Aug. 7, 2012 at 5:47 PM
2 moms liked this
Welcome to the group. What a cutie!

I have not been through this, but I know some mommas in here are woeking toward a diagnosis.

In my opinion, I think it depends on what a diagnosis will do. If it helps to get services or needs to be found to properly treat, I would keep going. But it is a personal decision only you can make.

((Hugs))I sending positive thoughts your way.
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JenaSmith
by on Aug. 7, 2012 at 5:59 PM
What a cutie pie! i know how you feel about beating urself up. My son is 8m and sever dev delay and deaf. But there is more to come and more drs also. Were still searching for the reasons and answers.
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mlogsdon
by on Aug. 7, 2012 at 8:22 PM
1 mom liked this

Thanks ladies. I just don't really have an outlet to discuss all this currently, my husband has the "don't think about it and it will all be ok" mentality. To him, all of this is temporary, so we don't need to talk about it.

I do want to know the reason, especially since having a diagnosis will make it easier to deal with insurance. I hope that the neurologist and developmental specialists have some answers. Or at least let us rule out those areas!


darbyakeep45
by Darby on Aug. 7, 2012 at 8:51 PM

Welcome to the group!  He's precious...adorable little boy!  Thanks for sharing with us...I personally think he's perfect:)

mandee1503
by Amanda on Aug. 7, 2012 at 9:55 PM
Welcome to the group! Don't blame yourself! Also I would see a nuerologist. If they find nothing just continue with therapy, and watch him progress!
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SamMom912
by Silver Member on Aug. 7, 2012 at 10:25 PM
I want to bite his little cheeks! Mmmmmmm!
Welcome to the group.
I too wonder what the hell i did .. Or didnt do wrong... But most days i try not to go there! Since there is a host of variables that it could be! Like looking for a needle in a haystack! I once read an article about how women with natural high folic acid in their systems who took prenatal vitamins before and during pregnancy could be the reason for autistic children... So... Im reading that i was too healthy to take the vitamins that my dr recommended?! That almost every prego woman takes! Lol wtf? Cant go there! Lol...
Can you eat to much health food? Exercise too much?

Id say as long as your little cutie is moving forward, give it some time... Id continue with all the help he needs cause earlier makes huge differences! Hugs
CameronsMommy23
by on Aug. 7, 2012 at 10:32 PM
Welcome mama! He's so adorable!!

I think at one pt or another most special needs moms beat themselves up. We all wonder what we could have done differently. But in my opinion everything happens for a reason and all of our lil ones are miracles. I can understand you wanting answers & a diagnosis. I'm the same way actually. Just give it time and if the exact cause isn't uncovered just know that you're doing a great job and he's going to do well bc he has such a caring mom like you. ;)
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mlogsdon
by on Aug. 7, 2012 at 11:48 PM
Thank you! And I bite him all the time ;-) he's very tolerant of my nonsense most of the time!

And I am so grateful that his doctors are so thorough. I'd rather have that be the case than have to fight for good treatment.


Quoting SamMom912:

I want to bite his little cheeks! Mmmmmmm!

Welcome to the group.

I too wonder what the hell i did .. Or didnt do wrong... But most days i try not to go there! Since there is a host of variables that it could be! Like looking for a needle in a haystack! I once read an article about how women with natural high folic acid in their systems who took prenatal vitamins before and during pregnancy could be the reason for autistic children... So... Im reading that i was too healthy to take the vitamins that my dr recommended?! That almost every prego woman takes! Lol wtf? Cant go there! Lol...

Can you eat to much health food? Exercise too much?



Id say as long as your little cutie is moving forward, give it some time... Id continue with all the help he needs cause earlier makes huge differences! Hugs

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