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5 yr old son diagnosed with MPPH

dejana Message
7 Apr 2022, 08:36 AM

Hi all, I'm new to the community. My son is 5 years old now, and was diagnosed with MPPH 2 years ago. He was born with the characteristic large head circumference but it took a while to diagnose him with genetic testing. Like all your kids, he was very late in sitting up on his own, let alone walking and talking. He has suffered from seizures since 2019, which are getting more and more frequent. At the same time, he is really gifted in certain ways - he taught himself to read in French and English and is very good at learning new languages. Has anyone else noticed this with their kids?

We live in Switzerland and there are no known cases here, so we'd love to be a part of the community and talk to people who are going through the same thing. 

HannahN Message
8 Apr 2022, 05:08 AM

Hello Dejana,

Interesting to hear that your son is gifted in learning new languages. It gives us hope. Our son is 2.5 years old now but doesn't talk or read anything yet. Does your son talk yet? Physically, my son can sit on his own, cruise leaning on furniture, climb up and down sofa and bed, crawl and creep around the house, stand independently for 15-20 seconds. 

There's so little interaction here in this forum. It would be easier to interact in MPPH Syndrome FaceBook group. Would love to see your son reading English and French! xx

dejana Message
8 Apr 2022, 11:38 AM

Hi Hannah,

Thanks for writing back. It does so much good to hear from someone dealing with the same worries. 

Your son sounds a little like mine at that age, it took him much longer to walk and talk. Until quite recently, he was still drooling whenever he spoke. He talks now, but he still says things that don't make any sense and repeats a lot of the same sentences. Speech therapy has made a big difference for him in the last couple of years. 

I'll try to find the FB group, thanks for the tip.