I'm so sorry you're facing all of this.
You're early in this journey, this is the most raw part, where your thoughts and emotions are all over the place and your brain and soul just can't keep up. I understand!!!
I'm glad you have a referral to a neuro, that's a good step.
How old is your son?
Do you have any support? Spouse, family, best friend?
Take it one issue at a time. Leg braces and physical therapy are going to be really helpful for him!! Braces do not have to be stigmatizing, no more so than glasses.
Mental retardation can have huge variance, from very mild impairment to severely debilitating. Therapies and other adaptations/interventions can help immensely. Try not to look too far into the future, there are just too many variables.
Remember, he's the same little boy he was before you got the results.
I hope you hang around here, this is a wonderfully supportive group!
I think it's great that you are reaching out for help. How is your support system in real life?
I don't have personal experience with polymicrogyria, but there is an excellent memoir, Schuyler's Monster written about it, by the father of a girl who was diagnosed around 2.
Often some of the hardest times are when you first get a diagnosis. I hope you do have support.
I agree too about leg braces and therapy being really helpful. It may be so very hard to see that right now however. I remember thinking too that I couldn't imagine having to have my son wear braces, but now he does and I'm so glad because they do help him.
Try to take it all one step at a time. Be gentle with yourself as you go through this process, especially when it is so new. Hang in there and just do the best you can! You are not alone.
CD(DONA) and Birthing From Within Mentor and Birth Doula
Welcome to MDC. The parents on this board have been through a lot, so even if no one here has experience with polymicrogyria, there's a wealth of info here. There are also a couple of parents with kids with severe developmental delays (sounds better than retardation any day).
It's a huge shock to have a diagnosis like this -- make sure you give yourself time to grieve and mourn the loss of your ideal child. Grieving the fact that your son will have challenges doesn't mean you love him less.
Finally, you should contact the Early Intervention services in your area. In addition to whatever services your insurance will provide, they will help with physical therapy, occupational therapy and speech therapy as long as necessary. Sometimes they're called Birth to Three, or something else. Your local school will know how to contact them.
I have a son with poly mirogyria of the right side of the brain. I want to let you know that it is not a death sentence. He is 12 years old and is doing fine. He is in the 6th grade and plays basketball football and baseball. The key to this disability is to be proactive. If the therapist says do this excercise once a day you do it five times a day. We have been through OT, PT, and Speech. We are now getting botox injections to help with the rigidity in the left side of the body. Miah did not crawl until after he walked. He did the army crawl also. That is a big step for these kids. He also used to have reflux bad, now it is only bad if he has the stomach flu or a bad cold. We have had to teach him differently. Music was the key to his learning. We put tasks to music, homework to music, and life to music. He is a very gifted trumpet player. This strengthens both his stomach muscles and diaphram as well as his facial muscles. He is good hearted. He loves helping with his nieces and nephews. He is able to retain information very well.
We used a therapy that would be used on stroke victims. We used vibrating items before they were cute toys. When he was little we did not sit in stadium seating sections that were crowded and load, this seemed to upset him. He has had to have his tonsils and anoids removed as well as tubes in the ears, but so hasn't two of his brothers.
I hope this information helps you. Be sure the nuro doctor is pediatric, they are hard to come by but worth the search. Also I would recommend hooking up with a good ortho doctor, we have had some bone length problems.
Think positive and encourage all new development.
A mother of seven sons and one daughter.
I found this thread through a Google Search, it looks like it's been inactive for awhile, but hopefully some of you are still around.
My daughter was born in 1996. From the very beginning, I kept asking her pediatrician why she wasn't using or opening her hand. They would brush it off and say it was normal for babies to clench their hands into a fist. Milestones came and went without her keeping up. Again I would question the fact that she wasn't sitting up, trying to crawl, etc. The response was "stop comparing her to your older child, she will reach her milestones in her own time. This was the same answer I'd get after repeatedly changing doctors. At one year, she still couldn't sit without a pillow to lean on, she never crawled. She would use her stronger arm to pull herself around on her belly. She used the weaker arm to prop up her bottle. "Stop comparing her" is still what they were saying. At 18 mos she had approximately 6 febrile seizures and stopped breathing twice. After 3 days in the hospital, they found that a kidney infection had caused the fever. The neurologist on call at the time came into the room and said "I'm sorry to tell you but your child suffered brain damage during the time she topped breathing." He then started showing me all the symptoms I'd been questioning for 18 months. When I explained her history, he basically called me a bad parent for not getting her help sooner. We left the hospital with nothing, no diagnosis, no answers. She started OT/PT and slowly started to open her hand within a year.
On and off over the next 10 years she was in and out of therapy. She was fitted for braces for her hand and foot, and was evaluated at the Cerebral Palsy Clinic. She has always struggled in school, especially with math. I had her tested repeatedly through the school district. They'd write up their reports saying they'd offer services, but within months, there were always cutbacks.
I would question doctors about different things, and no one had any answers. I've taken her to the ER three times now because she has passed out and hit her head. After the most recent time a few months ago, they changed the diagnosis on us several times. In the ER I was told Pachygyria. After follow-up with the neuro, he said pre-natal stroke. He changed it to a final diagnosis of Polymicrogyria after further testing.
We have since left that hospital and travel much further to see a better doctor. She agrees with the diagnosis and has also diagnosed her with scoliosis. 15 years and no one caught that. To look at my daughter, most people wouldn't think she had any issues. She's always called her left hand her "Lucky Fin" after Nemo.
Right now it seems like her only problems are with learning, and some left sided paralysis, which is minor after a lot of therapy. I keep reading that at her age, she can start having seizures and other problems. She also has trouble with memory and anger. When I try to find a counselor to try to figure out if we're dealing with normal teenage issues or Polymicrogyria, there's no one. I keep getting referred to places that specialize in Autism.
Hi Lucky Fin. I don't have any suggestions but I wanted to welcome you to the forum and to the board. It sounds like you've had a huge struggle getting a diagnosis and recognition of your DD's special needs and I'm sorry to hear that. It's so frustrating to see something amiss and just not get that help that you know your child needs. Thank you for sharing your story here!
Weary SuperMama to my amazing neurodiverse 6 y.o. DD and to my on-the-go neurotypical 3 y.o. DS
I am a grandmother to Brie, 13 months and diagnosed with polymicrogyria (PMG) at three weeks. After her diagnosis, the frustration of not finding anything written specifically for families nor any organization that served the needs of PMG families, we finally decided to start a website for families at www.pmgawareness.org. it soon went international and the need to form a nonprofit organization to serve their needs was more than apparent. And so from there we became a full fledged IRS approved registered 501c3 nonprofit charitable organization.
I just wanted to let you all know that we exist and would love the opportunity to provide support and information to you. If you have any questions, suggestions, or other input, please feel free to write me at [email protected]
THank you and we look forward to helping in any way we can.
Catrina Byrge, Brie's Gram
If all you can only see is that your Life has been altered and you want ppl to feel sorry for you...Give him to someone who will care Love and take care of him for However long he will be in your life
My Grand Daughter has Pollymicrogera and Is a Blessing. How do you do it you ask? One day at a time, research and find the best school. Then research some more. PT OT ST That isn't anything
to worry about. You will learn a lot about your child But you will learn a lot about yourself too. Your child deserves the best as do you so find and keep people in your life that will support you. Trust
me you will have enough to do with out all the Drama Queens out there. And no matter what Love him Hold him and show him you care.
To answer your question? One Day at a time... Because at the end...That's really all we get.
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