16 month old, undiagnosed

Jes - posted on 08/10/2010 ( 8 moms have responded )

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I don't exactly know what to write here, we're new to this entire journey. I always knew 'something' was wrong with my son, but no one could pinpoint it. So far he has a seizure disorder (thinned frontal cortex) and developmental delay (3m gross, 1m fine). No real diagnosis. I don't know if i really fit in here, but I am not sure where to turn. Overwelmed.

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Jes - posted on 11/15/2010

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Just want to update. We finally got a diagnosis. Well a couple. Its nice to see it on paper for a change. He's diagnosed with (partial) Agensis of the Corpus Callosum, Spastic Quad CP, Severe developmental delay and epilepsy. Just waiting for a few things to kick in and get the ball rolling. I'm not leavin but i want to thank you guys for your support and words. It really does mean a lot to know you are not alone . Even if its on the internet !

Ruth - posted on 10/14/2010

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I would definitely recommend an EEG if you have not already had one. I have a child with Infanitile Spasms which is a seizure disorder. The hands and feet going straight up makes me think that it is possible. I hope this helps you!! My son is also 16 months old and he does roll sometimes, hates tummy time, does not sit independently, crawl or walk. It is hard as a mom to watch your child struggle to meet milestones. Wish you the best, God bless

Jes - posted on 09/20/2010

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I think i found a pediatrician finally, but need to get the insurance in order (pests). And his IEP meeting has been rescheduled and is this week! Found a wonderful "advocate" at the childrens hospital in the next city. The one thing i hate is that we are back to full bottle feeding, maybe 1 or 2 jars of food a week, most likely not. It is stressful I agree full heartedly! Hopefully things will get moving. We also have an appointment with specialists at a major medical studies place next month. Praying for a diagnosis of some kind...almost anything will do anymore as long as someone aknowledges that im not nuts !!

Shea - posted on 09/20/2010

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Hi! I know how frustrating this can all be. My daughter is now diagnosed with schizencephaly, but it wasnt easy getting that diagnosis. We knew something was off with her too, but none of the doctors took me seriously until I started talking to other doctors in the same practice trying to find someone to actually listen to me. I actually just had a tiny "fit" due to all the stress, and no help. Finally got someone to listen to me and he ordered an MRI. But my daughter does the same thing. She is hypertonic so getting her to relax her limbs is rough. Usually massage is the only thing to loosen her up. And she looks up and to her left constantly. We always have to be arranging her so that whatever she wants to look at is on the right to try and get her to stop. Her hands are always fisted, so she doesnt play much, still doesnt sit up or crawl. I know how hard it is. Just pick one goal, and accomplish it. I know we want everything for our little ones, and theres nothing saying that they cant have it all... but set one goal at a time. I hope your son all the best. Ill keep you in our prayers.

Jes - posted on 08/12/2010

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That sounds similar. He'll move his head to the right and back to 'look over his shoulder' but its to look at us on the couch or whatevers behind him while he's laying down. Usually his legs and 1 or both arms go straight when he does this. He also laughs and smiles a lot...at nothing. When I do sit him up in front of me facing me and hold his hands to 'balance' him I find that his legs often stiffen and are either bent or straight but he'll propell himself backwards or sideways depending where his legs are...and its with force. I think i'm going to start having to write down some of the odd things he does, probably will be good for the new pediatrician when i find him !

Tara - posted on 08/12/2010

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This may be a odd question to you, especially of your son does not do this....but does he or has he in the past done "odd" things. Odd is a bad word to use but I always watch our daughter and sometimes wonder what the heck is she doing and why. She has always arched her back sometimes, and lately has started again. While lying on her back, she bends her head right back and sort of "pivots" on it. She smiles while doing this and I just don't know why. And I think she is capable of sitting up, she just moves around way to much to hold the position.
It is very frustrating and we have good a bad days. Some days I accept and other days I don't.
I have been looking more into autism lately due to some of things she does or does not do. it just would be odd if she showed autism symptoms due to the fact docs say they can't diagnos til later.

Jes - posted on 08/12/2010

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Right now he's only rolled back to front 3 or 4 times in the last 6 months. He doesnt sit up or crawl either. I usually have to prop him up. Nor does he talk yet. It is really frustrating not knowing. Also arguing with myself with denial and guilt. I keep hoping he will get things soon but then reality hits.

Tara - posted on 08/11/2010

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Hi. Sounds like we are dealing with similar situations.our daughter is 15 months, had seizures but has been seizure free for 8 months but still has not caught up. She cannot sit on her own and is nor crawling. She rolls all over the place. It is very frustrating some days not knowing what the future will look like. I would like to talk to you more and share more details to see the similarities.

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