New to Hypoplasia

[dakotah]

Hello everyone. I am new to the world of ACC. My 11 year old son was dx with hypoplasia of the corpus callosum in June. We are learning that many of his issues and dx are explained by the hypoplasia. Thanks to matthewsmom I have learned that overheating and headaches may be explained by the hypoplasia. I am wondering if any of his other issues are also explained by the hypoplasia. I know from the ACC Network that some of his issues are common characteristics of ACC but others I haven't seen listed anywhere. Do any of you see these things in your ACCers? Are they less common characteristics of ACC?

Anxiety
Tourettes
Vomiting- not associated with headaches
Benign bone tumor on leg
Deformed ear
WPW Syndrome- extra heart valve
Sensory issues

Also I am wondering if any of you have potty training issues with your child. My son still has accidents. I am wondering if delayed potty training is behind a medical problem that needs to be looked at. I have been told over and over again that he will outgrown this and nothing is wrong (even though no one has bothered to do any tests)

Thanks for any help you can give!

[matthewsmom]

dakotah,

Welcome to the ACCA message board.

Some of the symptoms and medical issues that you shared about your son who has hypoplasia of the corpus callosum I have seen other parents mention that their child also has in another support group I belong to through the ACC Network-ACC-Listserv.

lists.maine.edu/cgi/wa?SUBED1=acc-l&A=1

Several years back there was a mom who had 5 children. One of her kids has ACC and she also had tourette syndrome. The mom also had two other children who had tourette syndrome.

I have been searching through the archives in the ACC-Listserv and I also found another parent with a child who has ACC and tourette syndrome. I haven't looked at every single post in the archives so there could be more but it is something that I haven't seen often when corresponding with parents who have a child with ACC or a corpus callosum disorder.

Some kids who have ACC also have ADHD and/or behavior issues.

Many kids who have ACC have sensory integration issues. This is definitely a common trait sometimes seen with ACC from my experience with talking/writing with parents who have a child with ACC over the years.

I personally have not seen Wolff-Parkinson-White (WPW) syndrome mentioned before by a parent of a child with ACC but that doesn't mean it isn't possible.

When my son, Matthew, was diagnosed with ACC at four months old we were told by his doctors that because the corpus callosum is midline in the brain (in the middle) there is the possibility of other midline defects that can occur. The heart is one of those midline places and because Matthew was born with a heart murmur and then diagnosed with ACC he was immediately seen by a pediatric cardiologist after his diagnosis of ACC for tests to rule out a possible heart defect. After testing Matthew only had a heart murmur (which he outgrew) and no heart condition.

I'm not sure if you have already been told or read that when someone has ACC or a corpus callosum disorder there is the possibility of other medical issues being involved such as metabolic disorders, a genetic syndrome and chromosomal anomalies.

As for the vomiting you mention I have seen that talked about when a child with ACC has a shunt or hydrocephalus. There is also the issue of vomiting seen when a child has stomach issues or g-tube and feeding issues too.

A lot of kids who have ACC also have chronic constipation. My son suffers from this.

A lot of kids who have ACC also struggle with becoming potty trained. Many parents mention that their child is late in learning to use the potty and become fully potty trained. My own child, Matthew, is not potty trained.

Because Matthew was becoming more constipated and was struggling with walking (due to heel cord tightness and foot issues) more than normal and because he wasn't yet potty trained he was sent for an MRI to rule out something called tethered cord. It is my understanding that it can cause the sensations/feelings of needing to go potty to not be felt. Some kids who have ACC do have tethered cord and require surgery to fix this medical problem. After Matthew's MRI it was found that everything was normal and he should have normal sensation. However, at 15 years old, Matthew is still not potty trained.

I would suggest that you consider posting your note in the ACC-Listserv e-mail support group because there are hundreds of parents who have a child with ACC who will see it and have possible input for you. If you like I would be happy to copy and paste your note to the ACC-Listserv (remove your name if you want) and send any replies that I receive to you. Just let me know.

Sandie *Mom to 15 year old Matthew with complete ACC*

[dakotah]

This is so helpful! Thanks! My son has chronic constipation since the day he was born. One of his first dx was ADHD. I will bring up the tethered cord idea to our Neurologist (when we find one).

I would love to become part of the ACC listserv but I don't really get how it works. Is it blind/mass emailing? I feel like such a newbie

Thank you so much for your help.

[matthewsmom]

dakotah,

I'm so glad that you found the information helpful.

Seeing as you are still looking for a Neurologist...that would be another great reason to send a note to the ACC-Listserv. Many parents come in asking for good doctor recommendations in their area that other parents are taking their kids to see.

It's very easy to become a part of the ACC-Listserv. How it works is that you sign up by going to the link above in my original post and you fill out the information it asks for on the form. You don't have to put your full first and last name. I just put in my first name and the last letter of my last name.

Once you sign up you will need to wait to receive the confirmation e-mail from the ACC-Listserv and then you will click on the link that comes in the e-mail. That will officially sign you up.

Yes, it does come in as multiple e-mails. Each time someone in the group sends a note to the Listserv it will be e-mailed off to everyone in the group to read. Some people choose to receive the e-mails in one daily digest (all at once-daily) and others receive each e-mail as they come in. I prefer to receive the e-mails as they come in. Some days you may receive 10 or 15 e-mails and other days you may receive A LOT more e-mails. It just depends on how many people write notes that day. Each person in the group is limited to sending only three e-mails per day.

Of course, you will also see many other topics and off topic conversations that may or may not pertain to you and your child and may not be of interest to you. You can also leave the group anytime by going to that same link as well and signing off the Listserv.

If you decide to join the ACC-Listserv and have any trouble just send me a note and I will be happy to talk you through it. Or, if you prefer to just have me send your note to the Listserv on your behalf I am happy to do that.

Sandie *Mom to 15 year old Matthew with complete ACC*

[hannahsmom]

Hi Dakotah,
My daughter is 7 and has some of the conditions you mentioned. She had sensory issues when she was little, but an occupational therapist worked with her on it and now she's fine. She potty trained a little late at age 4. She vomited constantly as a baby until we figured out she had a soy allergy. If you look at food labels, its amazing how many products contain soy. Although she has hydrocephalus, it doesn't seem to affect her stomache. She does have GERD issues a little because she was born without her esophagus connecting to her stomache and had to have surgery to correct it. And she does have some anxiety. She gets into ruts of thinking (loves routines) and lately has been asking me to check her heartbeats every night because she thinks its too fast or slow and she's going to die. I have no idea how many of these things are related to ACC, but I think some surely are.
Leanne

[dakotah]

Hi Hannahsmom! Thanks for the feedback. I think his vomiting may be anxiety related. It is so hard to tell. We did a cleansing diet this summer and it didn't seem to help with anything. Trying to figure everything out is confusing. I met with a nurse at the urologists office. She was a big help. She suggested we see a neurologist about a possible tethered cord. We will do that. I am pretty sure it is behavioral but maybe not We put him on Ditropan and he stopped having accidents. We took him off the Ditropan without telling him and he hasn't had an accident yet. Thanks again for your input!

Matthewsmom thanks for your help with info on ACC-Listserv! I joined but am not active. I know this sounds crazy but I am not ready to be out there yet. We sent our MRI to Dr. Sherr and we are very patiently waiting to hear his opinion. I hate how long everything takes. We sent it almost 2 weeks ago and I feel like it was 2 months ago!! It was his office that said hypoplasia is a subjective diagnosis. I am not sure what I am hoping for. If he has it- it will answer all of our questions. If he doesn't have it- maybe he'll grow out of all these issues. It is called denial I know. You don't even need to comment on that remark Thanks for the support!

An interesting side note. For the past 11 years of his life we have been trying to find where we belong. He isn't typical ADHD. He isn't typical OCD or Anxiety. He isn't typical PDD/NOS. Doctors just said over and over again that he is a complicated child. There isn't one neat package that fits him. I don't think we were looking for the neat package. We just wondered where we belong. Where is the support for a child like him and a family like ours? None of the other groups really had the same issues as my ds. I am learning he has many of the same issues as kids with ACC. I am also learning hypoplasia is different from ACC but he still may have the same characteristics as ACC. He is lucky. He is high functioning but he is on a lot of meds to keep him that way. Thanks for listening.

[matthewsmom]

Dakotah….Sarah,

Thank you for all that you shared.

Not being ready to be out there yet does NOT sound crazy…not at all. I understand perfectly and I also felt the same way as you. In fact, it took me several years after Matthew was diagnosed before I was even ready to talk/write with other parents who have a child with ACC.

I was going to mention to you about Dr. Sherr. I’m glad that you are already aware of him and that you’ve sent your son’s MRI to Dr. Sherr. I can relate to what you wrote about not liking how long everything takes and not liking the waiting. Matthew saw a Genetic Doctor once and it was thought he had a particular genetic syndrome (Angelman Syndrome) so blood was drawn for very specific chromosome testing and those test results took four to six weeks to find out the outcome. It turned out he did not have the genetic syndrome that was suspected….but those weeks of waiting was way too long to wait and wonder. Just so you know, I have seen other parents on the Listserv also comment about the length of time it takes to hear back from Dr. Sherr’s office once they have sent their MRI but I know you will find out soon (just not soon enough when you're anxiously awaiting the outcome). All of the parents on the Listserv who have taken their child to actually see Dr. Sherr say wonderful and positive things about him.

You definitely have support here on this message board anytime you would like it.

Sandie *Mom to 15 year old Matthew with complete ACC*

[dakotah]

Dr. Sherr's office called and the big guy's diagnosis of hypoplasia of the cc was confirmed. They then proceeded to ask me if anyone has told us that he is missing his anterior commissure. No one has told us that. I am yet again amazed by what doctors pick and chose to tell us. At any rate now we know. We have the opportunity to go to San Francisco the end of August to meet with Dr. Sherr. That will feel good to find out if we are doing everything possible for ds.

[matthewsmom]

dakotah,

Thank you for letting us know that a diagnosis of hypoplasia of the corpus callosum for your son WAS confirmed by Dr. Sherr. I am glad that you didn't have to wait any longer and that now you know.

I'm so sorry that you were never informed of his other diagnosis (missing anterior commissure). I can't tell you how many times I have seen other parents mention that they were not given a medical diagnosis for their child (that was clearly written in the medical reports) and the same goes for some adults who have ACC and who found out accidentally by picking up a copy of their medical reports and reading it for themselves. That causes me a great deal of anger. I even wrote a blog post about this particular topic on the ACC Blog.

I'm so glad that there are doctors like Dr. Sherr who disclose ALL the medical information and diagnoses to their patients and that you found out that your son is also missing his anterior commissure.

I'm sure you are probably already aware that the corpus callosum is the largest commissure/pathway (having over 200 million nerve fibers) that connects the two hemispheres of the brain and allows for communication between the right and left sides of the brain and that the anterior commissure is a MUCH SMALLER pathway that also connects the two hemispheres of the brain.

I am glad to hear that you will be able to take your son to see Dr. Sherr at the end of August.

I'm posting two pictures of where the anterior commissure sits in location to the corpus callosum. (2 different views of the brain)

Sandie *Mom to 15 year old Matthew with complete ACC*

[dakotah]

Thank you for the info matthewsmom! Great stuff!

[matthewsmom]

dakota,

You're welcome. I'm glad you found it useful.

My thoughts are with you as you absorb and go over in your mind all that you have recently learned with respect to your son's diagnoses.

Sandie *Mom to 15 year old Matthew with complete ACC*

[Kelly]

Hello! I'be just found out that my son has hypoplastic corpus callosum or, like a doctor said, only hypoplastic splenium. He is only 1 year. Please tell me how are your child now, when they are older. .. how it will be? They are ''normal" They have friends? They are good at school? How hypoplasia affects them???