Becca has gotten to the point where the physical therapist that has been seeing her feels that it is time to do some type of correction. She is having pain in her knee and back, bulging in her back, and the difference between her feet and legs is getting much more. There was a really clear curve of her spine when the PT had her bend over from a standing position (and she didn't want to do it-PT thinks it is probably painful with the way her hips had to shift to do it). Does anyone have any experience with corrections for limb length issues? I would appreciate any input on what worked or didn't work or what we should avoid.
You are absolutely correct-we did expect it! We were just waiting for the time when correction would be needed. To begin with she will have some kind of shoe insert or have a sole extention. That will depend on the recommendation of a specialist (we don't know who we will see at this point as the PT is looking for someone familiar with children, in our area, and can work with our insurance and Birth to Three). This isn't so easy! Anyway, from there I have gotten the impression that there are surgical options probably being required (as a teen). I am not looking into that too much as technology has advanced so much in a short time it will be completely different when she gets to that point.
We haven't had new x-rays done yet but I am sure when we find a specialist that fits all the needs that new ones will be taken. We are seeing growth in her femur bone that hadn't been occurring before which is why they feel the difference has changed so much in 6 months. That is somewhat of an added concern because this wasn't expected on the x-rays that had been done at a younger age. This could mean there is something else going on. There are other families that have had this happen. I am just looking for input from people who have corrected and those that haven't. I heard from an 18 year old last night that didn't have correction and she has hip, leg, and back pain (and a smaller difference then Becca has now at 2). Also, there is concern because the compression is on the left side and that could have an impact on her heart that already has its own issues. There can also be problems with circulation when the hips are involved like Becca has.
Oh and the kicker to all of this is that the speech teacher basically told me that when Birth to Three services end that Becca won't be eligible for any special education services (or related services like PT) because her cognitive ability is too good. It doesn't matter that she has physical issues or health issues that affect her. We were bascially told we are now on our own after her birthday. So when she has to miss school for open-heart surgery I guess that doesn't have an impact on her learning, or the fact that some of the PE games are not safe for her, or that recess temperatures drop too low for her, or she misses multiple days for doctor appointments and then they drop her grade because she had too many absences. Sorry but I really need to vent!
Look into a 504 plan to address issues at school related to physical special needs. All of those concerns can and should be addressed in a lovely document.
When she turns three, call the school system and demand to have her evaluated. The Birth to Three people have different criteria than the school system does. If you request an evaluation, federal law says that the school system has to perform it. The speech teacher should only asses one area of ability, but you will need assessments across all domains.
No matter what, she will have to have a 504 plan.
Get in touch if you need help in getting assessments done. With a kid with autism, I'm an expert in that!
The school is actually already involved and they are currently providing speech. I think they are trying to pull something. The speech teacher told me that they didn't have to assess all areaa when she turns 3. I didn't think that was right (I was a special ed. teacher before moving to gen. ed.). Then I talked to my OT friend and she agrees something is up. The speech teacher is also the preschool teacher and she also now feels there isn't a need for a 504 plan (which she had always agreed before would be needed). I e-mailed Birth to Three and said I am concerned about the school intentions and that I have concerns about the meeting scheduled. They want to discontinue services. I was already told by Birth to Three that speech would continue to her third birthday (they want to stop after the meeting Feb. 27 and her birthday isn't until July). The school will not agree to a PT consultation even if I get them to agree to a 504 plan. I am in a rock and a hard place because I have to go to work with these people after I make waves.
The PT e-mailed me today. She is going to look into doctors outside our network as she feels that will be our best option. I agreed to have her move forward with that. She is also going to find out when the Shriners will be in our area next and try to get us on the schedule with them. She also feels that a plan is going to have to be written for adaptive PE as she feels that are several aspects of regular PE that will be an issue for Becca. She will be at the meeting to explain this so that will be good. She said that it will have to be provided (whether they have an IEP or a 504 plan) because PE is a state requirement as part of education in South Dakota. This makes me feel better to know that there is backing for what we are asking for.
Becca has an appointment scheduled with a new PM&R on Thursday. We will find out what the plan will be for the limb length difference. We are hoping that they will take any new x-rays that they need on Thursday also since we are traveling 5 hours for the appointment. We had looked into having the appointment at the doctor's outreach clinic in Aberdeen (about 75 miles from home) but unfortunately we couldn't get an appointment until July. She is having a great deal of pain and it has gotten increasingly worse the last week. She is complaining about her knees, hips, and back and will not go down the steps. I will come back and let you all know what we find out.
An international charitable organization that networks families affected by a vascular birthmark, tumor, or syndrome to the appropriate
medical professionals for evaluation and/or treatment, provides informational resources as well as sponsors physician education, mobilizes medical missions trips, and
supports research and programs that promote acceptance for individuals with birthmarks.
Information accessed through the VBF is presented in summary form
in order to impart general information relating to the diagnosis
and treatment of vascular birthmarks. Such information is not complete
and should not be used as a substitute for a consultation or visit
with your physician or other health care provider. Information accessed
through VBF website is not exhaustive and does not cover every aspect
of vascular birthmarks. VBF makes no warranty as to the information's
completeness, reliability or accuracy. Should you have any health
care related questions regarding this matter, please see your physician
or other health care provider promptly.
Information accessed through the VBF website is provided "AS
IS" and without warranty, express or implied. All implied warranties
of merchantability and fitness for a particular use or purpose are
hereby excluded. VBF shall not be liable under any theory or indemnity.
In no event shall VBF be liable for any damages, direct or indirect,
and all other damages, direct or indirect, special, incidental,
consequential or punitive, are hereby excluded even if VBF has been
advised of the possibility of such damages.