I haven't been on this forum in a while. I have 3 kids, DD1 will be 8 next months, she is severely dyslexic, anxiety issues, SPD, next is 4y DD2 who officially only has asthma now which really underscores the hell that we went through most of her life with her damaged lungs, and now I am here with 19m old DS. He doesn't have an official dx, much to my surprise mild cerebral palsy was thrown around for the first time today. Who knows but he does not speak at all, only whines and then has an excited shriek, no real babbling, along with leg issues, and some other symptoms. After months of waiting, he does have a speech eval next week.
He walked at 17 months, was not able to before due to his unsteady stance on his feet. He "out toes" as they call out quite severely, he looks like a ballet dancer all the time. His heels actually meet at times. One of his feet is worse then the other, he walks on the side of it and actually drags it slightly now. He was able to walk with a wagon prior to being able to actually balance himself and the dragging was more pronounced and gradually lessened to this. He is completely flat footed, no arch what so ever. No rigidity in his feet, the doc today described them like jello, very floppy. He does have hyperflexion in his knees. One of his hips are at the very outer normal limits before being considered hip dysplasia, like a fraction in the other direction and he wouldn't be normal anymore.
Which brings me to my actual question, what do I stick on this kid's feet? The orthopedic wanted him in stiffer shoes, like Stride Rites for right now. I have only put soft soles on him because he has a hard enough time walking as it is. The theory was because his feet are so moldable that he should wear something that might give a chance of changing that position. We are supposed to do x-rays again in 5 months and then maybe move on to more orthopedic devices and neuro consults.
So, he outtoes and he pronates and he has excessive platerflexionand is flatfooted?
I would be looking into either DAFOs or Suresteps. The earlier they get into these types of supports the less long term effectes on their mobility and their muscle memory.
We have AFO's b/c my daughhter has all the above that your son has and also a severe leg length discrepancy. She honestly would need a walking aid if she didnt have these supports. 17 months is really not too young to get started with some solid supports. Esp if he has CP.
Which, I'm so sorry you found out he has. That is never an easy dx to deal with.
Your PT can order these. Or they may have a company that does AFO/SMO
my son has low tone and pronates. He didnt walk until he was 18 months. WE dont have a diagnoses yet but we are working on it. my son wears sure steps. He has had them since he was 12 months. He goes in next month for a new pair. so we are going on 2 years of him in braces. WE do stride rite in xw width with his braces. I really like stride rite and it is all I buy even for my typical kid who is 6 almost 7 years old. YOu should talke to your son pt about braces that is who told us to get them and then we were able to put a "rush" on them by having my sons neuro talk to the orthotics doc
He is 19 months now BTW. I really liked the look of the Sure Steps. The big issues, we have no PT, the ortho doc didn't order anything. Just said to return in 5-6 months and we'd talked about it then. I am in a very rural area, I went to 1 of the only 2 ortho docs in the area that will take pedi patients. Being such a small area, my DH actually does contract work for this doc so we have to be careful not to ruffle any feathers by "questioning" his orders.
I have a call into my pedi right now to talk about getting a referral to a neuro clinic in the area. The only issue is that they only offer it 4 times a year (he comes down from across the state for a couple days to see patients), and I have a feeling the first one is already full for 2011. Otherwise it would traveling 8 hours each way and lots of money which we would totally if it was a sure thing, I would do it tomorrow, DH is the one dragging his feet. DH is terrified of the ortho doc finding out we went elsewhere (he doesn't want to lose his business) but I am going to make another appointment at the other practice and see what she says as well. I agree that he needs something more then waiting.
could you call back the first ortho doc and say "It looks like we might be able to get insurance to pay for some good shoes, but we need to be evaluated by a PT. Can we get a referral?" It's all true. I can't imagine that the first doc didn't refer you for PT.
And if the doc gets their nose of out joint because you went for a second opinion, he really shouldn't take it out on your dh.
I called the second ortho doc, I figured Dh can learn about it later. Unfortunately I developed verbal diarrhea while on the phone and let it slip that we had seen doc #1, they wanted all the records, I said I wasn't able to get them right now, and they were unsure if doc #2 would see us then. Hid nurse is supposed to call back today. I am going to wait a couple weeks and call #1 office and get the records on the basis that I need them for his other evals. Everyone in that office knows DH very well, he has worked for them for over 10 years, the gossip mill travels fast, everyone kept popping in that day to see his son but we have a different last name then he does so people will forgot soon enough what his kid's name is.
If I have the records then I can keep searching for another ortho doc who won't be so focused on speech. That was the whole lecture I got, that I need to spend the next 6 months getting him to communicate then worry about his legs later. As if I don't know that speech is important but I am working on that, but I also am not going to ignore his feet. There is another town 50 miles away that doesn't have as many ortho docs as we have but maybe someone also does pedi patients, like I said I really do live in the middle of no where! After that there are only even smaller towns until you get across the state. I'm still waiting on my pedi to call back with what she can help with as well.
I remember we saw a geneticist that was more concerned about my sons VPI then he was about the fact he just dx'd us with a genetic syndrome. I was like "REALLY? Do we really have to focus onn that right now? You just gave us some heavy news here......."
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