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Thread: Any families with dyspraxia or apraxia following craniosynostosis?

  1. #1

    Default Any families with dyspraxia or apraxia following craniosynostosis?

    my son was recently diagnosed with Dyspraxia and speech apraxia/dyspraxia. Right now all that has happened in the month since was I was asked to get him into the local school district because in the state of California they offer a preschool program for early start kids who have problems early with learning and speech. So far his symptoms have included balance issues, speech delay, and inability to do certain things with his hands that use coordination. The one question I have received every time i have told someone about the diagnosis is does it have anything to do with Cranio. That is the one thing I now have no idea about. So i want to start here a place i have always been able to turn. So now a month shy of 3 years post op has anyone else heard or have a child with this diagnosis following Craniosynostosis?

  2. #2
    lovin' my lambdoid cutie boy! evergreenmom's Avatar
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    I'm sorry to hear Seth is having these issues. Was he ever seen by a neurologist? I just reviewed an old thread of yours when you were wanting to get him to a neurologist but you were having trouble getting a referral.

    Balance and motor issues can be caused by a chiari malformation which has been known to occur in children with craniosynostosis- I know because my son has this. Chiari malformation is a herniation of the cerebellar tonsil into the spinal column and can occur from having increased intercranial pressure. Fortunately Xander hasn't had any symptoms and his surgical team relieved constriction during his CVR so we are hopeful that he will remain symptom free. Chiari is checked by MRI and cerebral spinal flow study. I believe chiari can also cause certain speech issues but it has been a while since I looked into that so I don't remember the details- sorry. Xander is in Speech therapy and has made great progress- at this point his therapist feels he mainly has articulation issues which are common for his age (2 1/2) and will hopefully get sorted out in time.

    Good luck getting answers and keep us posted on what you find...
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

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    roetik77's Avatar
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    My oldest son was diagnosed with dyspraxia at age 2 but he is NOT my cranio baby!!! There is absolutely no known cause for dyspraxia so I wouldn't say it's cranio related. My son still takes speech but has come a LONG way. He takes OT for a weak hand grasp.
    ~Kelley


    Cameron was born on 12/9/09, sagittal.

    Surgery 4/26/10 at The Children's Hospital of Montefiore.
    Dr. Goodrich NS & Dr. Staffenberg PS

  4. #4

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    Both of those are amazing to my ears. Thank you both. Ive been looking in every direction. He gets speech out he can tell me what objects are or repeat but he cant explain emotion, wants, or needs, he can name things but its like if we ask what he wants he will say lego if you hand him a lego he wont play with it and if you hand him the car he will. He does the same with food if you ask what he wants he will always say chicken. With potty training he will go if I take him but cant express when he needs to. His balance is off he has no retention of numbers, letters, shapes or colors. his peditritian has been worried since he started talking late and we saw a neurologist on his second birthday and then had a follow up in october when he was two they said it was two early to diagnose much because he could go up stairs and he was speaking a little he could say mom dog car and to them i guess that meant a lot. So at three they were the ones who diagnosed dispraxia, apraxia. But could give me no more than that. The neurologist spent about half an hour with him watching him play and tried to talk to him had him run go up and down stairs, had him try to hold up some fingers which he cannot do anything besides one finger or five. she had him try to touch her hand with one finger then his nose he struggled very much to do that. Im at a cross road and am scared we wont get into the state program again because he isn't "sever enough" thats what we were told when he was trying to get into the same program for younger than 3 kids. he was 1 point away from getting in on the assessment and they said because he could trow a ball and pick it up he wasn't bad enough to assist at that point and to wait till he was three and could be reassessed. so thats where im at trying to figure it out on my own yet again and then seek different help where maybe someone can help. His preschool teachers are getting frustrated because he's so far behind

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    lovin' my lambdoid cutie boy! evergreenmom's Avatar
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    So the neurologist did not check for chiari? It may be more the area of a neurosurgeon but from your old post it sounded like he was hard to get an appointment with. Where are you located? Maybe someone on her knows a good neurosurgeon that your ped could refer you to. Do some research on chiari and if the symptoms seem to fit then bring your research to your ped and demand a referral. You may need to be really pushy to get your little guy help through the school district if he is still "borderline" but quite frankly it really sounds to me like he could use some help so push for it momma!! Also with the diagnosis form the neurologist that ought to help him qualify....
    Kristin, Momma of two rambunctious cuties:
    Lucy born 3/05 "failure to thrive"- negative percentile on growth chart for weight 3/06 to 3/08
    Xander born 3/08 Left Lambdoid Synostosis and Chiari Malformation- Posterior CVR Surgery 2/09 w/ Dr Fearon and Dr Sacco at Medical City Hospital Dallas, TX (fought insurance and won in network gap exception) rant rant rant....

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    roetik77's Avatar
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    Where do you live? Are you in the US? Early Intervention gives services FREE until the age of 3. After 3, your school district decides on the services and it's still free. Devin started EI at 2 yr old. He had great services until he began kindergarten. He was getting 3x a week. We were warned that once he started school he'd be "swept under the carpet". That has been the case. They dropped him to 2x a week and in group. Now that he's in 1st grade, he gets 1x a week group. I guess I should be happy that they think he has come so far but I'd still like more one on one!!!
    ~Kelley


    Cameron was born on 12/9/09, sagittal.

    Surgery 4/26/10 at The Children's Hospital of Montefiore.
    Dr. Goodrich NS & Dr. Staffenberg PS

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    roetik77's Avatar
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    It sounds like not only does your son need ST but PT and OT as well!! Balance issues were one of the tests they ran on Devin and he was fine. He even passed all the other fine motor skills tests. It wasn't until his 2nd yr of pre-K that they noticed issues with his hand grasp and approved him for OT. His speech has been his main hurdle.
    My advice is have him diagnosed by a specialist and/or through your school district!!!!!!!!!!!!! There is no way they can deny him services. He needs them! If they don't approve as much as you feel he needs, FIGHT IT!!! You can have endless hearings to get what you want. On a side note you can always pay through your health insurnace but that is pricey.
    ~Kelley


    Cameron was born on 12/9/09, sagittal.

    Surgery 4/26/10 at The Children's Hospital of Montefiore.
    Dr. Goodrich NS & Dr. Staffenberg PS

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    josh'smommy's Avatar
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    IMO--just from having experience with both chiari (my son) and apraxia (my daughter), it definitely sounds more like apraxia than chiari. Chiari rarely causes developmental delays but rather disruptions in the neuro function (i.e. ataxia or partial paralysis). Apraxia, which was explained to me by the neurologist, is where the brain and the muscles are not communicating effectively/appropriately. So often, it isn't that the child doesn't KNOW what they want to do/say but rather the communication between the brain and muscles is disrupted to the point that they have difficulty with all levels of function...including gross motor (balance and walking), fine motor (timed release of a ball, writing, etc.), and speech (work selection and formation). My daughter has struggled with these things for years and we often see a lot of frustration from her when she is trying to do something and she can not get her body to cooperate. Does this sound like your son? I agree with Kelley on the Early Intervention. My daughter started just before her 1st birthday, continued up until 3, then transistioned to an IU preschool for 2 years before starting Kindergarten. She is in a specialized autism classroom, has a full-time aide (due to unstable epilepsy), and receives OT, PT, and speech within the school (each 3 x per week). None of this has ever cost me a dime. I would definitely find a neurologist you are comfortable with and ask for an outside OT/PT/Speech evaluation to arm your self with as much "neutral" findings as you can. Schools will always try to get out of providing services if a child is borderline by their findings. Having outside evals helps with any appeals processes. Good luck!!
    Jamie

    Mom to

    Nicolle (06/00)
    Kristyn (07/01)--cerebral palsy/epilepsy/PDD
    Josh (06/07)--metopic cranio
    Surgery scheduled for June 30, 2010 with
    Dr Fearon and Dr Sacco
    Chiari I Malformation decompression surgery 10/09 and Chiari revision w/ dural patch 04/10.

  9. #9

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    Thank you all so much we have been waiting on the school district for a 60+ days and I've been told it can take up to 90 to get an apointment. My son is only 3 so his pedi hopes we got him in soon enough. His pedi has been pushing for help since day one to this poiint we have been unsuccessful hoepefully now he can get some help.

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    My son, Graham, had sagital Craino (Repaired: 2/2010)and has Speech Apraxia. He will be 4 in early Jan of 2013. He is now in FT "special VE" PreK (variable exceptionality) Which they said he can do two years in a row until he would start kindergarten at the appropriate age.

    When I asked "Why? Why Apraxia too?" The neurosurgion, whom i have deep faith in, said "When something goes wrong in uterio like craino, sometimes there are other things that are related that can happen."

    Honestly? It's hard, the whole journey has been very hard on me. But I am so grateful when I think about other things that could have happened, or heck...other horrible diagnosis our children "could have" had.

    ONE THING THOUGH: I really wish we had not followed the advice of his speech therapist (whom I also liked, and she was the one who FINALLY diagnosed the apraxia) to NOT learn SIGN LANGUAGE. It's not too late and I decided tonight, I'll be looking into the classes and learning it with my husband and older son. But they had said not to do it, that he'll "catch up" and that it could "delaying his efforts".

    I want to communicate with my son...I want HIM to be able to communicate with me (us). He's moving forward, but slow enough that I think the signing will be a huge benefit and joy.

    Im glad i found this thread...hope your still out there.

    Nicole

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