This patient support community is for discussions relating to learning and education, motor and movement, neurological brain injury, premature birth, sensory integration, speech and communication, and vision impairment list groups.
Jaidyn is now 15 months old and can crawl on his hands and knees, sit up on his own and can pull up on furniture or our legs to stand. He cannot remain standing if he lets go, and cannot walk. He does have a baby walker (Like adults use, only cuter, with toys etc.) He loves it because he can walk behind it without falling. If you watch him from behind when he walks you can see that he walks on the sides of his feet. The physical therapy people say its because his ankles are weak. (My oldest son was born with clubfeet so my daughter thinks it is probably an inherited family issue.) His pediatrician and his Early Intervention people have never said anything about the shape of his feet, they only say his ankle muscles are weak. It seems to me that if his feet were misshapen They would have noticed before now. Having dealt with my son's clubfeet I don't see any resemblance, however I suppose it's possible. Jaidyn still can't vocalize very well and only occasionally uses consonant sounds. The PT people are having them use sign language with him. Why?
Can you ask his PT if he has club feet? That way you would know for sure. As parents it is our job to ask questions and stay informed. We can't just rely on doctors and therapists to figure everything out.
They are using sign language because it helps develop language skills. Children understand body language long before speech. Does your other child have any problems with speech? Perhaps that is a concern they have. You can always ask them why they are using sign language. A good therapist is always willing to answer the parent's questions. Good luck from another special needs mommy.
I guess I didn't mention that I'm Jaidyn's Grandmother, not his mother. My daughter is his mother. I will ask her to inquire about club feet next time he has therapy. I'm going to see if I can be there, but the timing isn't always good. The thing is he seems to be able to hear fine. That's why I was surprised to see that they are trying to teach him sign. I guess they might be thinking he's not going to be able to speak for a while. As I mentioned before he is mainly using vowel sounds. I wish they would diagnose him so we could know for sure what's going on.
Jaidyn's therapist says that he doesn't have club feet. He has low muscle tone and his ankles are weak. I think he has cerebral palsy, but we are still waiting for a diagnosis.Do kids with a special needs diagnosis like C.P. get Social Security?
Yes, they generally do get social security. They can also get state insurance. The low muscle tone is a big concern and I think that you should get a diagnosis soon. Make sure you ask to see a developmental pediatrician ASAP.
My daughter's hearing is fine, but her speech is very behind for her age. She talks closer to how a 2 year old would and she's 5. Many people teach children with no developmental problems sign language as it helps with speech. If his speech doesn't develop well they will most likely also get him a voice device. The iPad is a pretty good one and there are grants you can get for one.
Thanks. Jaidyn's next doctor's appointment will be in August when he is 18 months old. I am hoping they will give him the tests needed to diagnose him at that time. It's hard to be the only one that is recognizing his disability. The rest of the family think he is just developing at his own pace. At least he is getting Early Intervention and has been since he was about 8 months old.I would like a diagnosis ASAP but have to wait on the doctor.
Unfortunately it can take a while to get a diagnosis. Things tend to move slowly. Since they are allowing him to have intervention that is very good and it sounds like they will get to the diagnosis at some point. I hope things go well at his next appointment!
I joined MedHelp in Dec 2012, and have been posting about my grandson Jaidyn since then. I have been concerned about his development and whether he has CP or not. My daughter, his mother, is holding on to the hope that he is just developmentally slow. Do you think it would be okay if I told her of my concerns and asked her to bring up the subject of CP with his doctor?
I don't want her to worry more, but it seems to me that she needs to be aware of what's causing his issues as soon as possible so she can accept it and deal with his needs. Even though he is getting EI at this time I feel that knowledge of his needs will better prepare her to advocate for him.
Again, my question is should I bring up my concerns to my daughter so she can bring them up to her Dr.?
I just found out Jaidyn has a Dr. appointment on Aug 13 and my daughter is going to address his issues. A new friend of hers that didn't know any thing about his past was walking with them, holding on to one of Jaidyn's hands while my daughter held on to the other. She asked my daughter what was wrong with his left leg. (this is the same leg that he drug while doing the commando crawl.) My daughter is now realizing that something is wrong with him. She asked me about what I thought it might be. I was then able to bring up the subject of CP, but also suggested that she talk to his pediatrician about a possible diagnosis.
She also told me about two other behaviors that I was unaware of. He drools excessively and shakes his head a lot. I am hoping that his Dr. suggests an MRI. At least it sounds as if we will actually get a diagnosis soon.
Thanks for your interest. My daughter asked the pediatrician about C.P and other issues. The pediatrician was noncommittal on the subject of C.P but arranged for Jaidyn to get his hearing checked, and prescribed another session of PT. He will still have his in home PT but will also have a session that my daughter will have to take him to, so he will be having PT twice a week. The Dr. also referred him to a child development specialist, but he will be on about 6 month waiting list. Jaidyn also has a teacher that will come see him once a month.
My daughter still thinks that he will overcome his delayed development and is just growing at his own pace. I still think he has C.P.
hi,its so difficult not only for doctors to establish any kind of diagnosis because they have to see how a child develops..and i know with all my heart from my own personal experience how true that is..its always more tests.and come back in 1,2,3 months..referrals here there and everywhere..and i couldnt agree more..its wrong,.i always felt fobbed off,and im still searching for answers and my daughter is 18 now..but as a parent..it took me so long to except that anything was actually wrong also..it turns your world upside down,but its the not knowing and even if you do know its accepting... there is no easy answers,.but i believe that you have to fight and keep strong and follow your instincts..and support each other and stick together.. doctors arent always right..i also know that from personal experience...i wish you all the best
Thanks for your encouragement. I know from what I have read that C.P babies aren't always diagnosed before they are 3. I am hoping that Jaidyn will be diagnosed at his appointment with the specialist in about 6 months. He will be 2 in February. I will continue to support my daughter as she deals with all his appointments. I know she doesn't want her "little man" to be disabled. I don't blame her for grasping at straws to make her son develop like most other children. She is just trying to be optimistic.
At least we know Jaidyn is less disabled than most of the other children with C.P. in this forum. We all try to do our best no matter what. I was told by one mother of a C.P. adult that you first have to grieve over the little baby you wanted and then take care of the precious child you have.
Hang in there everybody. My thoughts and prayers are with you as tears roll down my face.
Things are going good. I'm not nearly as worried about Jaidyn as I was. He is actually going to be able to walk! He took 5 very wobbly steps Thursday. His PT was there and he walked between her and his mother giggling the whole time. It was exciting to watch. His PT said, "well I guess he won't need a walker!" It will probably take a while for him to walk further, but he is determined. He is getting to be quite the character as his personality becomes evident! Thank you for asking.
My daughter is 19months and just,started walkin and my other 2 children were born with no issuses bit,with the ankles my daughter was,in,castes from 2 weeks,old,until 6months and at,that time she went,into pt you should ask,your pt about afo's they are a brace that comes just,above,the ankle and gives them more suppor
My daughter was also delayed in everything as well and it,took alot of visits to specialists but she was finally diagnosed as having cp there is different levels of it but there is a chance jaidyn could have it,to no an expert but some of the things you are sayin is what was,happening to my daughter
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