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Discussion Starter · #1 ·
1st let me say I am new here and forgive me for missing something<br><br>
I am a mom who has a 20 month old. .He was born full term. He was slow to gain weight and we were told he had reflux at 1 month old. by 3 months we found he swallow and digestion contractions were very slow and not rythmical.<br><br>
He smiled sat and held toys on time<br>
He rolled over tummy to back 11 months<br>
He rolled over back to tummy 12 months<br>
Craweled 11 months<br>
walked 13 months<br><br>
he has no speech. He makes sounds but no words at 20 months not even mama or dada. He doesn't babble much at all less and 5 min a day.<br><br>
He used to be able to eat pretty well with a spoon now seems to forget what to do. He walks like he is still learning how to walk. He has low tone and very floppy in the legs only uses his left hand 10% of the time (more to pull a lego apart)<br><br>
hear sight xrays all normal<br>
I have EI but they are a joke in my area.. they just play with him. I do far more with him. I bring him to PT OT and soon Speech at the childrens hopsital in my area..<br><br>
Neruo and ortho seems to think they other one should be treating.<br><br>
He is social and smiles and shares<br>
but often I call his name and he doesn't turn around.<br>
.<br>
I am so lost I am almost burnt out.... we have no Dx and I just want to know I am mad almost not at my son but at the run around.<br>
I also get the "wait till 2" comment allot... HELLO what the heck is almost 12 weeks going to change..??
 

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Just off the top of my head- has he had an MRI? I would press for that. The using one side more than the other could be a mild form of CP and I would want to rule out a brain injury. (which my daughter has) I would also look into a genetics consult. You could do a chromosome test and maybe rule that out. Chromosome errors often result in delays and hypotonia. If EI isn't doing much for you look into private programs. We work with <a href="http://www.nacd.org" target="_blank">www.nacd.org</a> and love them. They do an eval every 3 months and then give us a daily program that we do at home.
 

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If you are concerned about speech, make sure you get a hearing test. My daughter began losing her hearing after she turned 1. It isn't the most common cause of not talking, but it is easy to check!!<br><br>
Oh, and some kids with hearing loss (with a specific dx) have low tone, balance trouble and low tone.
 

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I agree, I would also push for an MRI. Sounds so similar to my son. We did an MRI at 9mo and found he did suffer a small area of brain damage that affected his gross motor and fine motor coordination. (Called PVL) I am not saying that is the case for you, but given your concerns an MRI could really be helpful.<br>
EI comprised PT in our home (we also added outside PT through our insurance) and he worked very hard to overcome much of his imbalance.<br>
It sounds like your drs are not listening to you at all, I am very sorry for that.
 

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I don't have any advice, but we are very much in the same place. In our case, there is some hearing loss, but there is more to it than that. We also don't have a diagnosis yet.<br><br>
I'm feeling very lost in all of this, and I don't know if it's paranoia that's making me see red flags more often now, or the fact that there really are more red flags now.
 

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He's got a lot of similar stuff as my son had and yes you are right to be concerned.<br><br>
I would start with metabolics. He's got strong markers.<br><a href="http://www.mothering.com/discussions/showthread.php?t=734501" target="_blank">http://www.mothering.com/discussions...d.php?t=734501</a><br><br>
Treating mitochondrial issues has made a huge difference for my son in so many areas.<br><br>
Who you see matters very much in the mitochondrial area particularly. Let me know if I can help/you have qeustions.
 

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Discussion Starter · #9 ·
hearing test was done negitive done just 2 months ago<br>
I have asked the Neuro Pedi and Ortho for an MRI they all said wait till age 2.<br>
We are getting genetic testing done in Aug. (long waiting list)<br><br>
What do you mean by metabolic???.. the GI ran a bunch of blood tests and they came back negitive. He did say he should to go feeding team do to very slow weight gain<br><br>
I to have thought mild CP but no one will say it but me. .I even said it to everyone even all his doctors could it be CP... no one would say yes or no.... GRRR
 
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