a few ideas

[Guest guest]

Hay , I can relate to what you are going through. Santi has gone through

PT since the day he was born and continues even now. I remember when he was

about 1 he also started getting really frustrated and mad. I think more then

anything it is the age and the fact that he is being forced to do movements that

he did not want to do, they are probably making Evan work muscles that are

weaker, thus he gets more tired. Santi also has hypermobilidad, but it appears

that is comes with his syndrome of Beals, but I doubt that your little one has

it, it is associated with contractures of the limbs, high palete, and skinny

skinny legs etc. those being the main ones. Be patient, you will see a

difference in a few months, once he starts verbalizing more, and starts gaining

more strength, you will be amazed. You might want to talk also with your PT and

make sure they are making it " fun " for him. I know it sounds unimportant, but I

switched PT and found one who specializes in

children only. The difference was incredible, games, singing, dancing, all to

help build up muscles. Santi started to have fun and wanted to go. They won´t

do what they are asked unless it is something that they find interesting, no

matter how much force or threat they might use to get them to do something, it

won´t work. These kids are smart and want to have fun, just like us!!!!.

Swimming is also great to build up those muscles, Santi loves it and he has

gotten so much stronger. A walker is also great to get him around the house and

feel more independent, make sure he has no hip dislocation, the walkers

shouldn´t be used if he does. Patience and fun are the two words that worked

for me . Good luck

Kelli and Santi

basketsnboyds <basketsnboyds@...> wrote:

Hi guys

I have a concern, that I don't know how to address, I thought that

some of you may have experienced some of the same things--

Evan (almost 13months) is having PT 1x per week to help with muscle

development and strengthening and learning to walk and attain other

goals set by the PT.

The other day he addressed the fact that when Evan gets frustrated

or tired he tends to get upset and will sometimes hit his head on

the floor/table, etc and shakes his head " no " from side to side. He

has been biting some when frustrated and pinching as well. This is

NOT a problem as he only does it a few times a day when frustrated

or tired. When I re-direct his attention he usually will do ok.

The PT also addressed how Evan's joints seem to be somewhat

hypermobile- he says this could be from not walking yet and when he

does, these will strengthen.

So I feel like we have a few things that could all be related-the

torticollis,plagiocephaly,progressive scoli, hypermobile joints,

this new behavior---

Not sure what to think. I don't want to over react, just wanted some

ideas as we observe him.

I do think it is VERY normal for Evan to get frustrated b/c the cast

does limit him and since he isn't talking he can't verbalize his

frustration to me and has no other way to express to me. Any

thoughts?

Thanks for letting me ramble, I don't usually like to post such

personal things, but I just wanted some input.

and Evan

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