2 year old boy - help

[bubi]

Hello to all,

glad to find your community. We are in big problem, my sisters son, who is now 2 years old, had a car accident 5 months ago.
Control MRI of the spine revealed severe atrophy of the upper cervical spinal cord (C1-C4, fracture of the corpus Th4 was shown. The brain was not injured.</SPAN>
The child is now tracheotomised, artificially ventilated, weaned for 5 times a day, tetraplegia is present. Contact with him is possible and he is completely conscious. He is eating per os and via nasogastric tube. We do not know if he has some feelings as he cant speak with trach, when we tuch his back and stomach area we see that he has certain feelings, but dont know what kind of them. 3 weeks after accident he was able to make little movements with his legs and right hand when we aked him to, today after 5 months on intesive care unit it seems like he does not know any more what he should do with hands and legs, like he totally forgot his previous life.
He is able to move his head and shoulders. He has no apetite, in 5 months has grown 10 cm, and at first lost 1,5 kg than got 5 kg.
In 1 month he shuld be transfered to rehabilatation center, but here in Slovenija (Europe) no is suitible for SCI child with ventilator. We would like to provide him best he can get so we are looking for appropriate one in Europe also in USA. I would like to ask you for your suggestions. We know that rehab is very expensive but also know that is imortant that would be the good one.

SCI nurse: I gave your article (/forum/attachment.php?attachmentid=24284&d=1219891048 to his terapist, is this valid also for children?

Thank you so much and i hope you will understand my english.

Best regards

[Eileen]

I am so very sorry. I have no answers but wanted to bump your post back up to the top so that someone else might be able to help.

[Bonnette]

I don't have answers, either, and certainly wish I did. As Eileen says, hopefully someone will be able to guide you. Your English is fine, there will be no problem understanding what you say. Blessings to all of you.

[SCI-Nurse]

So sorry. The best resource I can suggest is the Shriner's Hospitals in the USA that specialize in SCI care for children. I know that in some cases they will take children from outside of the USA. You can contact them to see if they would consider him:

http://www.shrinershospitalsforchild...pinalCord.aspx

This is the east coast Shriner's SCI center:
http://www.shrinershospitalsforchild...ladelphia.aspx

Right now apparently they are accepting patients only from a limited geographic area, but you can still apply and see if they will make an exception:
http://www.shrinershospitalsforchild...hia/Apply.aspx

(KLD)

[bubi]

Hello,

I contacted Shriners but answered that they not accept childrens on vent, while reading forums i noticed that Shriners in Philadelphia works also with children such lesson.
I would also like to know your opinion about RIC in Chicago, Kennedy Krieger Institute and perhaps Kinder Spittal in Zürich...We would be gratefull for answer.

I have additional question about his bladder, he was doing it in his diaper but something was always left, so one urologist came he was really arogant men and said he has neurogen bladder and inserted him cistostoma, we were angry as he ment to insert it without any analgetics- alive if you can understand my meaning becouse he is anyway tetraplegic and he is certain no feelings too. So thic cistostoma was not insertid correct and fell out twice , when it happend he was again doing in in diaper. Since that time he did not even come to check how it is with him now. My quetion is, is this cistostoma right decision?

Than you

[SCI-Nurse]

RIC, Kennedy Kreiger, Shepherd Center (Atlanta) are all wonderful. Does his family have the kind of money that would allow them to private pay for such places for rehab? They are very expensive. Please contact Shriners in Philadelphia back. My understanding is that they do take vent patients, and more importantly, the care is free there.

I am not sure what a "cistostoma". Is this an indwelling urethral catheter? If so, then it would be much more appropriate to have him on an intermittent catheterization program, where the catheter is inserted 5-6X daily just to drain the urine, and then removed. This has much lower risk of infection and other complications than an indwelling catheter. Anesthesia is generally not use for inserting such catheters. Was this physician a urologist? He should be seeing a good pediatric urologist, ideally one who is experienced in neurologic urology.

(KLD)

[bubi]

Dear SCI nurse,

cistostoma is catheter which is insertid directly in his bladder.
We know about all costs and we could somehow manage it. Of course it would be much more convinient if it is free. That is why I need help, as almost every clinic we contact say that they have very good outcomes. As I know how important is good rehab for him as he is new and it is fresh we are in big dilema where to send him...

[Patrick Madsen]

I just went on site of the Shriners'. I found this in the FAQ section:
Who is eligible for treatment at Shriners Hospitals for Children®?
Answer:

Children up to age 18 are eligible for admission to Shriners Hospitals for Children® if, in the opinion of our physicians, there is a reasonable possibility they can benefit from the specialized services available. Acceptance is based solely on a child’s medical needs

The service area of Shriners Hospitals for Children® includes the United States (including Puerto Rico), Canada, the Republic of Panama and Mexico.

I would still contact Shriners and se if they can accomadate him.

The above posts should help bubi. I am so sorry to hear of your nephew bubi. Breaks my heart. If there is anything I can do for you here, please don't hesitate. Where is he now, in Europe or where. Perhaps, with your permission, I or someone in the know, could contact some of the units here. I wonder if Pat Rummerfield, with Kennedy Kreiger, could have some influence for this young man and his family?

[bubi]

Dear Patrick,

thank you for your post, I will contact Shriners again
definatelly.

I have alredy written e mail to Mr. Rummerfield and actually he suggested Kennedy Krieger, it looks nice only thing that bothers me, that they are mostly rehab center, our boy needs to be done also on weaning from his vent, it could be done only in Jane Hopkins (i heard is great) - is near the Kennedy. Every rehab seems good to me as i do know more details or have feedbacks. He is still at hospital - in Slovenija - Europe and we would be happy to find something good for him in Europe. But we must not look most convinience but best he can get. It is hard decision, whish i could get more infos...

[Scaper1]

Have you tried any facilities in Germany?

[trainman]

Hi bubi. It has been a few weeks now, how is your nephew doing? I have been a quadriplegic since age 3, so I know somewhat what he is going through.

Have you had any progress in finding a rehab facility yet? I know a boy, age 3, that just finished rehab in Atlanta, it sounds like they do very well. I hope you are able to make progress soon.