Puberty and my daughter

dylski

I am a widowed father of a daughter who is 10 years old with a condition called agenasis of the corpus callosum my daughter has the mental age of a 12 to 18 month old. My daughter is I believe on the verge of puberty . My question is  has anybody got information on what options are available to my daughter to ease her through puberty with the least pain and discomfort.  I will be going to see her neurologist soon and want to have as much knowledge on what options are available to my daughter as possible. Thank you for reading this post 

Sam_Alumni

Hi @dylski

I just thought you could possibly connect with @motherscuffer who has a son with agenasis of the corpus callosum. He is younger than your child but perhaps you could offer eachother support? She mentions it on this post.

motherscuffer

Thanks for the tag Sam, my little boy does have ACC too, I don’t know much about puberty and the condition though. I think a book aimed at young children about puberty will probably help her so she can at least hear a little about what is happening. Are you a member of Corpal? It’s a UK charity for people with ACC. 

dylski

I am a member of corpal and thank you for mentioning the book but as I said my daughter mentally is only about 12 months old so the information is for me to help me to make decisions on how to proceed with puberty.  Thank you for replying to my post

motherscuffer

Sorry I’m not more practical help with ways to help her. I’m sure her neurologist will be able to support you both. It might be worth asking if she’s able to delay puberty or go on one of the hormone pills that stop her periods as I imagine that could be upsetting for her, especially if she was to get period pains. 

Sam_Alumni

I hope @PSHEexpert will be along soon.

We have some information here on periods that might help.  Have you spoken to your GP or specialists about this?

PSHEexpert

Hello! Apologies again for missing a couple of threads - I am just catching up.

As per my post over on the other puberty related thread - I really feel strongly that this might be something that needs to be approached with the input of clinical specialists.  There isn't really much puberty information out there for children/young people with very young cognitive function/understanding; it may prove to be too abstract.  It might be that her medical team recommend delaying the start of puberty to minimise distress to start with, although this doesn't work for everyone and can't really be sustained.

May I ask whether her school have had any discussions about doing puberty education?

dylski

I have now spoken with my daughter's neurologist and we have agreed on a plan of action.  She has seen my daughter who is around 10 and a half and says that she is starting to grow some breast tissue andbthis is what I had guessed. I was only asking on here to have a general view on what is available.  I was always going to seek professional advice when coming to a decision.  No school has not discussed about puberty with me .my daughter was tested for early puberty around 2 to 3 years ago as she has quite a lot of public hair. Thank you for your input regarding my enquiry it is much appreciated. 

PSHEexpert

Hello!  I think I'd just ask school if it's on their agenda so you can see what resources they're thinking of using when they do do any discussion or education -(and if they're not planning on it, I think I'd be inclined to get the neurologist's take on how they can support you and your daughter so it's all consistent).  We've had the best results here when we've shared what we've got resources or curriculum wise with home/clinical so we don't undo anything that has been decided at home (I'm based in a SEN college, so a bit older students, but we still have young people whose cognitive function is really young and who struggle with their periods, erections, private touching etc).