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Prognosis for 2-year-old with a Pons CM

PostPosted: Thu Jul 05, 2018 11:21 pm
by SeattleCP
My 2-year-old son was recently diagnosed with a 2mm CM in his pons. He presented with significant balance problems, eyes that wouldn’t pass midline, slight facial droop, sleep disruption, and major irritability presumably due to headaches and double vision.

Like so many of you, we are devastated and looking for experience from anyone who has had a similar diagnosis in a young child.

- Is there a relationship between having a significant bleed at such a young age and greater likelihood of additional, more devastating bleeds?
- Do bleeding events tend to get progressively worse, or not necessarily?
- We are aware of the fine work of the Barrow Institute, but are there other centers specializing in pediatric surgery?

Basically, our family would be very grateful to hear any experience of young children with CMs (particularly in the brain stem). Did you choose surgery or not? If so, how did you make that decision? What has the outcome been for your child?

Apologies for the meandering questions. I humbly trust that members of this community will understand how our heads are spinning and questions spill out in all different directions.

Thank you all for sharing your stories and experiences.

Re: Prognosis for 2-year-old with a Pons CM

PostPosted: Fri Jul 06, 2018 1:25 am
by Elizabeth
Welcome,

I'm so sorry you are faced with this challenge. It is all very scary at first especially with a young child. Make sure to read the main AA site for all the routine recommendations and knowledge as you will need to become an expert to advocate for your son. Also, recently there are now "centers for excellence" where you can find doctors that actually know about angiomas. Check out the centers for excellence for answers to all of your questions. I'll try to guess but I don't actually know all of the answers.

Will the bleeds get worse?
Not necessarily. Nobody knows why they bleed so you can't really predict what will happen or when. I think there are some statistics on increased bleed possibility for a certain number of years following a bleed...I can't remember the number like increased risk for 5 years and then after that a lower risk, with deeper angiomas carrying a higher risk...I think. Find the experts, they will help you. There is research ongoing right now for possible medications that might help. That is very promising and greatly made possible by AA pushing, advocating for research and a cure!!

I'm sorry I'm not more helpful, but find the experts, hopefully they can help you!!!

Re: Prognosis for 2-year-old with a Pons CM

PostPosted: Wed Jul 11, 2018 6:25 pm
by Michelle2000
SeattleCP,

I'm sorry you are in this position. Elizabeth is correct that the risk of a bleed decreases over time, and the first 2 years after a bleed are the most likely to have a rebleed. If I remember correctly, the rebleed risk returns to the baseline (whatever that is) after 5 years. The problem is different studies have shown different things, and each lesion has its own risk. You didn't mention if your child has multiple lesions, but if he does, one may behave and another may not.

I don't know if there is a greater risk of subsequent bleeds if one is younger when the initial bleed occurs. My son was 9 when his pons lesion bled following hitting his head at wrestling practice. His bleed was somewhat atypical and his symptoms were severe. (vomiting when his head turned, double vision, loss of balance and ability to walk, severe headache, left side weakness, etc.) He had surgery and is doing well, but surgery is not an easy option. It creates a new brain injury in hopes of alleviating the original injury. I agree with Elizabeth that taking your son to one of the Centers of Excellence is a good idea. Most neurologists and neurosurgeons do not see many cases of CM, especially pediatric cases.

Best wishes,

Michelle

Re: Prognosis for 2-year-old with a Pons CM

PostPosted: Mon Aug 06, 2018 3:19 pm
by Connie Lee
We have pediatric Centers of Excellence at Boston Children's Hospital and at Cincinnati Children's Hospital. There is also the children's hospital associated with UCSF. Finally, Issam Awad at U of Chicago does see kids.

On Facebook, we have an Angioma Alliance Parents group where you can find many other parents whose young children have had lesions in the pons.

Finally, be sure to connect with the Pacific Northwest Community Alliance who can provide support locally. Click on Washington state on our map: http://www.angioma.org/map