Ped. Physiatrist question

Re: Ped. Physiatrist question

• Florak8

  January 2012

  We see one, and I do think it could be beneficial. I agree that some neuros just don't seem to get the hypotonia thing. Our physiatrist monitors his tone and strength and write prescriptions for the equipment DS needs (AFOs, etc.) We see him maybe 3 times a year.

  We have seen more than our share of neuros, and now we see an epileptologist, a metabolic/genetic neuro, and a local peds neuro who monitors progress and checks blood levels for his Keppra. It seems to be a good solution for us. 

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• torrey111

  January 2012

  I'd go with what your gut is telling you.

   

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• st.augbride member

  January 2012

  Our physiatrist, Katharine Alter, works out of Mt. Washington by Hopkins and is fantastic. I'm not sure she takes new patients right now (we got in to see her through an NIH protocol) but her whole group is very good. https://www.mwph.org/services/rehabilitation/physiatry.htm

  They are very different from PT as they focus on movement disorders (including the physiology, neurology, and genetics of them). They also are good "big picture" docs in that they recognize the importance of PT and other therapy and can help guide you with therapy/equipment that will make a difference. The only really beneficial thing our neuro has been able to say is that we aren't dealing with seizures (at one point we weren't sure) and that he has lower muscle tone. Other than that, I haven't been thrilled with neurologists.

  

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• marleysmom member

  January 2012

  Hi there - I lurk on this board because I actually AM a physiatrist and I learn so much from the parents here. I am still in residency so have not specialized yet, but I have worked closely with the pediatric specialists in my field throughout my training. We/physiatrists tend to view kids with special needs in a very different way than the neurologists. Since our focus is on maximizing function instead of cut-and-dry diagnosis and treatment, a lot of times we are better equipped to help families and kids develop unique strategies to improve quality of like in lots of ways. I would strongly encourage you to seek out a pediatric physiatrist to at least see what they have to offer. We usually work with a whole team including PTs, OTs, STs, social workers, and a whole slew of specialized therapists that may be able to add something to your child's care. We are generally open-minded and support our families in seeking out alternative therapies. As the pp mentioned, we are more "big picture" folks who take a look at family and home dynamics as well to see what ways the whole family's needs can be best accomodated. Good luck!

  

  

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• duchess0727

  January 2012

  My opinion is that neuros are good for initial testing and diagnosis and for acute medical issues - like seizures.  But once your child no long has any pressing medical concerns that they can treat, you are better off seeing doctors who can assess what you are doing to aid in development such as a developmental pediatrician, physiatrist, etc. 

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• ToastieSimons member

  January 2012

  Our PT actually warned us about that.  She mentioned if we had seen a physiatrist for DS's hypertonia and we said "no, noone has mentioned it".  So we followed her advice and set up an appointment.  She warned us that it was our decision to discuss it with our neurologist because she said unfortunately they don't tend to see the value in it and can be offended by choosing to go to one.

  Our neuro's were very blase about it.  Basically he said "I doubt it will help but go ahead see what he says".

  I LOVE our physiatrist.  He has helped so much.  He's puhed for our AFO's, got our gait trainer, knee immobilizers, and helped us with Botox.  In fact, he such a valuable member of our team I sent him an e-mail with a picture of DS actually sitting up and he wrote back that he was so excited that the Botox helped and it made his day.  Becasue of DS's rare genetic mutation he actually seems to always remember us and he knows our PT so it's great to have someone who really seems to care on a personal level about our son and about his OVERALL physical success.  I found our neuro's are mostly concerned about his neurological success.  They told us to push therapy but they don't discuss specifics with us and HOW to work on skills.  They are overly pushy about doing MRI's and while they examine his tone and reflexes when asked how to manage them the best they don't really have much input. They've been very skeptical of Baclofen and botox.

  To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
  

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