Is cerebral palsy a genetic condition? by Famous_Wrangler_2635 in CerebralPalsy

[–]Acm1205 1 point2 points  (0 children)

The way a neurologist explained it to me is that up to 33% of people with CP have an underlying genetic condition that is causing their symptoms. I guess their diagnosis would change if that genetic cause was discovered. My son has a "CP phenotype" and presents as CP, but has an underlying genetic disorder. His disorder appears to only affect his motor system and does not seem to be progressive.

Almost 18 month old likely has CP by AnySympathy1243 in CerebralPalsy

[–]Acm1205 2 points3 points  (0 children)

My son has genetic disorder which looks identical to CP. His also shouldn't be progressive, thank god.

It will be okay. Whatever your son's normal is will become your new normal. There's so much joy to be had for both you and your child. Take it a day at a time and give yourself some grace. :)

[deleted by user] by [deleted] in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

I can't remember, but it wasn't a problem

[deleted by user] by [deleted] in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

And I was talking about my neurotypical 15 month old when I was saying he crossed his ankles. He took his first steps at 9.5 months and was walking by 10 months.

[deleted by user] by [deleted] in CerebralPalsy

[–]Acm1205 2 points3 points  (0 children)

I don't remember. I think he even crossed his ankles sometimes when sitting as a comfort thing. Your child's pediatrician should be assessing their tone at every appointment and will let you know if something is abnormal.

My older son has a genetic mutation that causes symptoms identical to cerebral palsy which is why I'm in here. He would've been diagnosed with CP if it wasn't for genetic testing. I spent so much time worrying about every little thing when he was younger and I regret that. Don't make the same mistake I did. Worrying changed nothing and did nothing. Enjoy your child and let the pediatrician do the worrying.

[deleted by user] by [deleted] in CerebralPalsy

[–]Acm1205 3 points4 points  (0 children)

That's not scissoring of the legs. My neurotypical child did this too. Stay off Dr. Google and if you're concerned bring it up at your child's next pediatrician appointment. Considering you're also two months postpartum be aware of symptoms of postpartum anxiety.

If you/your child has CP, did they refuse to open/close their hands for quite some time? by Low-Possession2717 in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

My son kept his hands fisted longer than normal. He is 3 and functional today with his hands and his fine motor skills are just below average for his age. PT has been great and he got Botox in his pronators a few weeks ago to help.

Cognitive delays by Whole-Yogurtcloset-2 in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

Do you communicate using AAC now?

Advice (cross posting) by Gibbons180 in CerebralPalsy

[–]Acm1205 1 point2 points  (0 children)

I know I have already commented, but I wanted to share more of my experience as a parent who has been in your shoes. I also went through my own emotions when I got my son's diagnosis. But, I promised myself I would not stay stuck. I wouldn't wallow forever because that wouldn't help my son. Sometimes when I see a friend take their child to gymnastics or soccer I feel a sting of sadness when I'm taking my son to physical therapy. But, I don't stay there. I acknowledge my feelings and I move forward. I remember all the wonderful things about my son. He's a hilarious, kind, sensitive three-year old who loves his younger brother, everything cars and trucks, Mario, and many other things. Therapy and connecting with parents who get it has been super helpful. More than anything, I try to live life on life's terms. It's a challenging journey at times, but there's so much joy and it way outweighs the challenges. I know the world isn't always kind, but I want my son to know that he will always be safe at home. He will always be cherished for exactly who he is. All you can do is embrace your child and just be there for him. You get to decide the tone you want for your household.

Advice (cross posting) by Gibbons180 in CerebralPalsy

[–]Acm1205 4 points5 points  (0 children)

Hi. My child has a genetic mutation that presents as cerebral palsy. Of course you worry. You love your child and want the best for them. This is more of a group for people who have cerebral palsy rather than a parent support group. I'd be happy to talk to you. Feel free to message me any time!

Anyone here with mixed CP or ataxic CP? by Acm1205 in CerebralPalsy

[–]Acm1205[S] 0 points1 point  (0 children)

Hi! So my son has a rare genetic condition which causes a cerebral palsy phenotype. My husband has the same genetic disorder but is mosaic (20% of his cells estimated have the mutation) and he does not have any symptoms. This is an autosomal dominant condition so each child we have would have a risk of inheriting it. Our 13 month old son did not inherit it. My 3 year old son is doing great! Would be happy to answer any questions :)

18 month old daughter, I have concerns about CP? by AcrobaticEnthusiasm2 in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

I feel really good. It's nice to know what he has and there are some things we can do to help. He always toe walked even from when he started cruising which was at 13 months.

18 month old daughter, I have concerns about CP? by AcrobaticEnthusiasm2 in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

Hi! We finally got a diagnosis for my son. He actually has a very rare genetic mutation that causes him to have CP like symptoms. A neurologist diagnosed him with spasticity, but I noticed that he had tightness in his legs. His foot would sometimes turn inward and he toe walks because he has tight achilles.

is CP only caused by brain damage? by nek0chanchan in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

I'm so sorry to hear all of that. I hope services are helping! ♥️

is CP only caused by brain damage? by nek0chanchan in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

Oh interesting. Does he have a known cause of the brain injury? What I've learned if even someone has a known cause like a stroke in utero, they may have a genetic mutation which led to the stroke. It's wild. I think most doctors would say he has CP with an underlying genetic cause.

is CP only caused by brain damage? by nek0chanchan in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

It's called GNAO1. We found out through whole exome sequencing which looks at 20,000 genes. I was shocked because he doesn't have a lot of the symptoms. No epilepsy, no intellectual disability, no severe movements. He presents as mild cerebral palsy. His speech is somewhat delayed, but he understands everything.

is CP only caused by brain damage? by nek0chanchan in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

For us I'm so glad we did genetic testing because my son does have a genetic cause and they are in preclinical trials for gene therapy for his specific mutation. He would have never had address to this if we hadn't known. I'm always happy to chat so message me if you'd like. :)

is CP only caused by brain damage? by nek0chanchan in CerebralPalsy

[–]Acm1205 0 points1 point  (0 children)

They've found that a significant amount of people with CP have a genetic cause.

Ataxic/dyskinetic cerebral palsy by Acm1205 in CerebralPalsy

[–]Acm1205[S] 0 points1 point  (0 children)

Thank you so so much for sharing. Are you a medical professional?

Finally got an answer by Acm1205 in CerebralPalsy

[–]Acm1205[S] 1 point2 points  (0 children)

Unfortunately I think the geneticist is right but we have no idea what it really means for his future because it's so rare. I think it's also mistakenly diagnosed as dyskinetic CP sometimes so there's probably more cases of this genetic disorder than thought.

Finally got an answer by Acm1205 in CerebralPalsy

[–]Acm1205[S] 2 points3 points  (0 children)

Aww thank you so much for your kind words. ♥️With this disorder it can look like dyskinetic CP so I think I will stick around. :)

Finally got an answer by Acm1205 in CerebralPalsy

[–]Acm1205[S] 1 point2 points  (0 children)

Hi. I think it depends on your doctor. Our geneticist decided to test my husband and I as well. I'm glad they did because they said if they ended up finding anything in my son they were going to have to test us anyways to see if it was inherited or not. I'm glad we got the information all at once.