speech therapy?
speech therapy?
Is chewing a problem for brachial plexus pt's. Or even swallowing. I've heard that speech therapy can correct this. My son is only 9mths old. Should I contact his therapist about this or just let it go for now. I don't want to seem pushy about this. Sometimes I feel like maybe I ask to much. Anyone have any advice?
Re: speech therapy?
Ahhh, some more ancillary problems with bpi....
Juliana had major problems with this. She couldn't nurse properly, drooled, and had big time sensory issues in her mouth (ahem, still does!).
Yes, a speech therapist can help with all of these issues. For some of the kids it has to do with a partially paralyzed diaphragm. In order to swallow without choking, you have to time your breathing, kids with diaphragm problems with have issues with this. Juliana also had (has) the gag reflex from hell. The slightest thing can set it off.
We didn't have a problem with weight gain or growth though, as she ate a lot of the foods that she liked.
She is now 9 1/2 years old and is slowly trying new foods. She was a very late talker and boy is THAT a problem of the past!
You can NEVER ask for too much or ask too many questions. Your instincts are correct, go with them. If you are in a birth to three program, tell your coordinator that you want a speech eval.
good luck, let us know how it turns out.
claudia
Juliana had major problems with this. She couldn't nurse properly, drooled, and had big time sensory issues in her mouth (ahem, still does!).
Yes, a speech therapist can help with all of these issues. For some of the kids it has to do with a partially paralyzed diaphragm. In order to swallow without choking, you have to time your breathing, kids with diaphragm problems with have issues with this. Juliana also had (has) the gag reflex from hell. The slightest thing can set it off.
We didn't have a problem with weight gain or growth though, as she ate a lot of the foods that she liked.
She is now 9 1/2 years old and is slowly trying new foods. She was a very late talker and boy is THAT a problem of the past!
You can NEVER ask for too much or ask too many questions. Your instincts are correct, go with them. If you are in a birth to three program, tell your coordinator that you want a speech eval.
good luck, let us know how it turns out.
claudia
Re: speech therapy?
Thank you so much everyone. My Help Me Grow case worker will be coming out to the house tomorrow. Should I talk with her about this or should I bring this up to my surgeons. I'm just not sure if it's more of a texture thing or if he doesn't like it. We did okay up to stage 2 or even stage 3 fruits and veggies. He also does okay with cereal. But when we try to feed him anything with any solid in it he gags. By the way everyone I emailed Dr Kozin. I'm not sure if he can email me back or if he even does that but me and my husband are interested in a second opinion. Thanks again everyone!
Re: speech therapy?
First off: you will like Dr. Kozin very much. You should always get 2-3 opinions when it come to treating this injury.
Secondly, you should definately talk to your case worker about this. Sensory issues are VERY REAL and very much a part of a bpi life. They can be reduced and dealt with, but you must learn how to do it.
You need to stop apologizing for advocating for your child. No one is going to give you services or accommodations, you need to ask for them. And in many cases, demand them. YOU know your child best. Your intuition is keen. Tell your case worker what is wrong and that you want it evaluated. You don't have to be rude or mean, but be firm and confident that you know that your child needs more services. Many of these services will ebb and flow. Things that you need at one time, you might not need at another. Make it clear that you want to nip issues in the bud so you won't need so much in the future. We did speech early for Juliana (she was in it by about 14 months) but did not continue it when her first speech therapist left (she was 2 1/2 ish) because she did not do well with change and because she was making slow progress. I had learned what to do with her, and so I continued to do what her therapist had. As I noted earlier....speech is no longer a problem!
I don't know what your OTs or PTs are like, but it helps to have an OT or PT who is on your side to help you navigate the system and who will go to bat for you if there are questions. My OT always told me what tests to ask for and was actually the one who told me I could change caseworkers when my first case worker and I didn't see eye to eye (as in her view of bpi: "it's nothing, they all resolve on their own...").
Keep trusting yourself, you are doing a great job. Oh, and check out a book called "The Out-of-Sync Child". It is about sensory issues.
claudia
Secondly, you should definately talk to your case worker about this. Sensory issues are VERY REAL and very much a part of a bpi life. They can be reduced and dealt with, but you must learn how to do it.
You need to stop apologizing for advocating for your child. No one is going to give you services or accommodations, you need to ask for them. And in many cases, demand them. YOU know your child best. Your intuition is keen. Tell your case worker what is wrong and that you want it evaluated. You don't have to be rude or mean, but be firm and confident that you know that your child needs more services. Many of these services will ebb and flow. Things that you need at one time, you might not need at another. Make it clear that you want to nip issues in the bud so you won't need so much in the future. We did speech early for Juliana (she was in it by about 14 months) but did not continue it when her first speech therapist left (she was 2 1/2 ish) because she did not do well with change and because she was making slow progress. I had learned what to do with her, and so I continued to do what her therapist had. As I noted earlier....speech is no longer a problem!
I don't know what your OTs or PTs are like, but it helps to have an OT or PT who is on your side to help you navigate the system and who will go to bat for you if there are questions. My OT always told me what tests to ask for and was actually the one who told me I could change caseworkers when my first case worker and I didn't see eye to eye (as in her view of bpi: "it's nothing, they all resolve on their own...").
Keep trusting yourself, you are doing a great job. Oh, and check out a book called "The Out-of-Sync Child". It is about sensory issues.
claudia
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: speech therapy?
There is also a lengthy Topic thread on Sensory Dysfunction, AKA, as Sensory Intergration Dysfunction,but I don't have time to find it...I ALWAYS forget where it is. Information there is priceless. We adults have shared that we have had sensory issues all of our lives but never identified them before finding UBPN.
Can someone please find that Topic thread for "OphersMOm"?
Carolyn J
LOBPI adult/70 &++++
Can someone please find that Topic thread for "OphersMOm"?
Carolyn J
LOBPI adult/70 &++++
Carolyn J
Adult LOBPI
Adult LOBPI
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Carolyn J
- Posts: 3424
- Joined: Tue Apr 06, 2004 1:22 pm
- Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.
My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!
I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too. - Location: Tacoma WA
- Contact:
Re: speech therapy?
Maranders,
I'm glad I had time to find this for you today.
Hang in there for Abby. Speech Therapist can help so insist until you get an evaluation..
HUgs,
Carolyn J
LOBPI Adult/70
I'm glad I had time to find this for you today.
Hang in there for Abby. Speech Therapist can help so insist until you get an evaluation..
HUgs,
Carolyn J
LOBPI Adult/70
Carolyn J
Adult LOBPI
Adult LOBPI
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nkjacoby
- Posts: 81
- Joined: Sat Jun 21, 2008 9:06 pm
- Injury Description, Date, extent, surgical intervention etc: Nicholas is 11 years old and his birth was complicated by a severe shoulder dystocia resulting in a severe LOBPI. He has had 5 surgeries to date with very little improvement. His left arm has never fully gained any functional use and has been completely flaccid until his last surgery. It now sits at a more natural position, but he is still unable to use his arm. However, his hand function was never limited until after his most recent surgery and is now completely limited due to an ulnar nerve entrapment. He is getting ready to have his 6th surgery in April to free the ulnar nerve from his last surgery. He is an amazing young man who never gives up on his dreams. He is my HERO!!!
Re: speech therapy?
My son had a serious drooling problem as an infant, even while not cutting teeth. We did have him involved with a Speech Therapist for a while. He did things like practiced blowing bubbles and things to help with his oral motor issues. It did seem to help him. Now that he is older the only time that he really drools is when he is really focused on completing a task. He does seem to still have slight issues, but we are working through them.
Message was edited by: nkjacoby
Message was edited by: nkjacoby
Mom to Nicholas 11 LOBPI, Dawson 7, and Kalyssa 5