Special Needs

Thin corpus colostrum, anyone with experience?

Hello all,

 

We just got the results of our dd MRI. It showed a slightly thin corpus colostrum. Does anyone else have experience with this?

 

Thanks 

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Re: Thin corpus colostrum, anyone with experience?

  • I don't personally have experience with this but I wanted welcome you to the board and say your children are beautiful.  I do know there are a few moms on here with corpus callosum experience, while I'm not sure if it's specific to the rostrum but I'm sure they'll chime in.
  • Hi, my son has hypoplasia/partial agenesis of the cc. Go to the website NODCC (national organization for disorders of the corpus callosum).
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  • Our son, Nate, has hypoplasia of the corpus callosum which was caused by genetic micro deletions. There is some information at the NODCC website as well as a national conference in July in Texas. We attended our first conference two summers ago and it was a great experience. NODCC also has great podcasts available of the conference lectures on their website. You have to dig a little for them.

    Another blog that has tons of information is called "angels around the world"  You should be able to find it by googling. 

    THe most important thing to remember is that each child can present completely different than the next. Most children have developmental delays, but according the research many will have average/typical intelligence. Learning new things is difficult, and you have to know that one day they will get it, that repetition is the key.

    Your child should automatically qualify for early intervention services because of the diagnosis. I encourage you to look into if you haven't already. Your child can get physical therapy, occupational therapy, speech therapy, developmental therapy, feeding therapy, etc, etc. Depending on your state, these services could be free, so take advantage of them. You will need to either google early intervention, child find or infants and toddlers.

    Feel free to ask us any questions and welcome to the board no one else wanted to join either. HUGS. 

    WAY 2 Cool 4 School


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  • Also, make sure you have your child's eyesight checked by a pediatric ophthalmologist. Children with Callosal disorders also tend to have vision issues as well. Nate had an immature macula, some strabismus we corrected with patching and he also has a bit of intermittent nystagmus.
    WAY 2 Cool 4 School


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  • Assembly, are you guys going to the conference this summer? We are planning to go.
  • I want to, sort of. We got a lot of information and good feelings at the one we went to two years ago, but it was also overwhelming. The podcasts are an excellent way to bone up and be ready for questions. I encourage you to check them out before you go. Especially dr. Brown's one about intelligence and Sherr's about acc the basics.

    Right now the plan is to go when Nate is older (6 or 7) so we can focus on stuff regarding school and puberty. However, DH and I have never been to texas so it is possible we could go just for the heck of it. He gets tons of southwest miles through work.

    If you plan on doing vacation stuff, I encourage you to do touristy things before the conference. Ours brains were mush after the conference and we were glad we did most of our touring before. We also saw Dr. Sherr after the conference which was nice. So if you get a chance to meet with him somehow do it.

    WAY 2 Cool 4 School


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  • Thank you all for your kind words.  I almost cried when I came back and saw that I had 6 replies to my post.  I often feel like I am so ALONE with her " unknowns."  Although I do not post much, we are not new to the board. My dd has had difficulties since birth...all BIG surprises to us as we had a perfectly normal pregnancy.  I just lurk, however I need to come out the woods and post more often because you never know who may have advice.

    We have known she has diabeties incipitus and growth hormone deficency that we found out shortly after birth.  BUT up until last week, that is all we knew. We have ran every test under the sun and found nothing.  She is obviously delayed and has some physical abnormalities ( clenched hands,very high arches in her feet, and strabmismus in her eyes) Now, we know she had lack of oxygen to her brain shortly after birth and a thin corpus colostrum. 

     She is in Early Steps and getting physical therapy, occupational therapy and starting speech therapy soon.  Her eye doc is doing surgery soon to try to correct the strabismus in her eyes.   

    She has grown leaps and bounds since birth and is the joy of our everyday.  I have certainly learned to take life one day at a time.  Thanks again for all of your words, I will certainly look into the website and blog:)

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  • I typically lurk on this board, but I wanted to thank you for posting this. My DS has agenesis of the corpus callosum as well as holoprosencephaly. He was also born with an Encephalocele. I am going to look into the conference and podcasts too. I feel pretty isolated over here because I don't know anyone else going through it. Anyways, thanks.
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  • LA has c-ACC.  I am not surprised that they found a cc issue with your child since pituitary gland issues and CC issues are a very common pairing.  It sounds like you are hitting the major specialists--you might consider genetics just to see if there is an underlying chromo issue.

    The frustrating thing for a parent is that no two CC kid are alike and all the other comorbids can be the real "cause" of delays and other issues.  It makes it next to impossible to give a generalization for what the future holds for our kids. 

    In our case, LA has delays, most notably in speech, and took a little longer for other milestones (crawled at 11 months, walked at 20 months), but the great thing is, she is getting it.  Slowly but surely and it is amazing to watch her develop.  Getting therapies and services is great...but don't forget to let her be a kid as well and do things with her that you would do if she were developing at a typical rate.  Just when I think something is too hard for her and we shouldn't try it...she surprises us and reminds me that I can never underestimate this kiddo!

  • I'm almost 23 weeks pregnant and found out week before last that the baby girl has complete agenesis of corpus callosum.  Now we are in the difficult position of considering termination.  This abnormalitiy is so ambiguous that it makes this decision agonizing.  I contacted Dr Sherr, who is the expert in the area and got the statistics which we are using to steer our choices.  This is truly horrible.
  • imagecarriespt:
    I'm almost 23 weeks pregnant and found out week before last that the baby girl has complete agenesis of corpus callosum.  Now we are in the difficult position of considering termination.  This abnormalitiy is so ambiguous that it makes this decision agonizing.  I contacted Dr Sherr, who is the expert in the area and got the statistics which we are using to steer our choices.  This is truly horrible.

    I have a daughter with c-ACC.  If you want to talk, pm me.  I will say--I am going to try to convince you to keep your daughter :)  Our daughter has delays and some struggles, but nothing that cannot be worked with.  Are there other issues she is facing besides acc?

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