United Brachial Plexus Network, Inc.

My son Jack has a r-BPI which is doing well. He just turned 3 this month and am curious about a couple of things. He has a great speech delay and Sensory intergration dysfunction. His actual diagnosis for his speech is Oral Apraxia. A neurological speech disorder where the child has difficulty with motor movements so when they know what they want to say but it does not come out right. I just always wondered if there is a connection with him having the BPI at birth and this neurological speech disorder. Anyone else with a child with speech issues and could there be a connection. His arm is not 100% but has good fine motor and gross motor issues. I know that when he is doing gross moter stuff he is lefty and when doing fine motor he is righty. He is suppose to be getting muscular stimulation but my insurance will not cover and with it being 150$ a month for it on top of him getting prvt. Speech at 100$ a week and OT at 80$ a week I would end up in the poor house. So any info on dealing with ins. they state that the muscular unit is expeiremental so they will not cover.
Thanks in advance
Eileen mom to Jack 3 and Sean 18 months, and would have also been a BPI had I not forced the DR. to give me a C-section.

welcome Eileen
Im sure they are connected but I have no personal experience with the speech challenge issue - Im passing on input here...just a hug to ya

Eileen - hi and welcome to the message board.

I wanted to comment about the therapy/money issues. I don't know if you are from the states or not but here, there are state funded therapy programs. You can find out more at the site http://www.nichcy.org. For example in our state, Pennsylvania, we are able to get Early Intervention therapy (this is educational model OT, PT, speech, etc.) which does not cost anything. We were also given a secondary insurance to cover what the primary insurance does not. So being that I don't know where you live, I can't tell you what services are in your area, but do check that site and all the pertinent links for your state will be there.

About the muscle stimulation unit...do you know if this is TES or NMES or another kind? here is a link to my site on estim.... http://www.injurednewborn.com/maia/estim.html.
It'll explain the differences and there's also a lot of information on trying to get the ins. companies to pay. Some companies also have a rent-to-own program. And also- there are foundations that may help you with this unit. Check this page http://www.injurednewborn.com/resources.html - bottom section Misc. for links.

I'm just surprised that although your son has many diagnoses, that no one has ever told you how it happened and what it was that was injured or damaged. It just doesn't seem right. Drill them for answers.

good luck,
francine

Fran,

How did you get secondary insurance? How does that work and how would I check into it for my state?

Hi Francine and All,
Well I am in New Hampshire and the unit is the NMES by Empi. The dr. I went to see Is Dr. John Grossman from Miami Children's who we saw when Jack was 2 in New York. Luckily Dr. Grossman is in New york for 2 days a month and we caught him just while he was there. The reason for us going was when Jack was born he was seen by a neurologist from birth. He told us that it would take time to see the extent of his injury, wether the nerves were bruised, torn or severed. Jack's r-arm was compeletly paralyzed. He saw him at 1month of age as well as the Physical Therapist who gave us exercises to do with him at home. He saw her 1 time at the hospital then again at her office. Within 1 month he was seen with the neurologist who thought he was doing quite well, he was starting to elevate his shoulder slightly. The muscle tone however was significantly diminished and with no bicept reflex at all. The neurologist at that appt. 1month old said that no recomended therapies were needed that he would be fine.
So PT was stopped and of course trusting the professionals we were extremely happy. Jack saw this neurologist 2 more times before he was let go with the "He will be fine and good luck" line. That last appt. Jack was 8 1/2 month old. While we thought he was doing very well, he had good hand function, with no asymmetries, and he was able at the time to lift his arm above his head.
THen when Jack was 18 months and really starting to walk quickly, I noticed that when he would do this his right arm was at his side. He started Early intervention at 18 months for speech and brachial plexus because that was how we got him qualified for BPI, not speech, but at the time Speech was significantly my main concern and just starting to notice some issues with his arm.
His elbow was not fully extending. I called the neurologist for an appt. the same neuro, he saw at birth. When I brought Jack in the neuro. said yes there is something here, but why is he not in therapy? I told him that he (the neuro) did not recomend any therapy after Jack was 1 month. He said then that there is really not much he could do now that JAck was already almost 2 that it was too late. He recomended dr. Peter Waters at Boston Children's. He said it was his friend who was very good, which I am sure he is but did not want to go to anyone he knew thinking that he would want me to go to someone he knew to cover his hide. So I found Dr. Grossman and he recomended the NMES to me and have been fighting my insurance since. So how is that for a long explanation. Sorry but thought you guys would like some background. I have asked his old neuro. Dr. grossman and others if there is a connection with speech, SI and BPI all have said "NOT SURE"
THanks for all responding. I use to live in Massachusetts and am now in New Hampshire.
I am truly grateful for Jack to be doing so well but I know he has a long road dealing with so many special needs. I hate DR's since they really screwed up my son. Another thing my OBGYN said that when he came out she heard a pop! that is all I know.
Very Sincerely,
Eileen

Eileen,
Hi, and welcome to the boards. I have a 4 year old son with a LOBPI. He was just diagnosed with Auditory Defensiveness Sensory Integreation Dysfunction. I have heard of many families who are dealing with learning disabilities and sensory issues as well as the BPI. I was told that sensory integration problems can arise due to traumatic births or oxygen deprivation at birth. So I believe they are all related in someway. There are alot of good sites about SI's. I just typed in sensory integration in the search area and quite a few came up. Best wishes to you and your son. And again welcome to our "Family".
Karrie & Kyle

My daughter had the problem with apraxia. She had a speech therapist through early childhood intervention. She was much improved after about 6months of therapy. She still has a little trouble with certain words, but pretty age appropriate stuff. I think it is related, but I don't have proof.

THank you all for responding. I appreciate all of you. I am in the process of fighting to get the unit covered and am so busy, with the whole of JAck's issues it is hard to not get crazed. He is doing well and I am thinking of going back to his dr. to get re checked. So much to think about and not enough time in the day! But again thanks for all your replys and making me feel welecome to your group of obviously wonderful caring families.
Eileen

Just wanted to say welcome and good luck. I have no experience in this so I hope the other posts help. Good luck