Welcome to the TBI-HELP Live Chat

Today's topic is: "Pediatric Traumatic Brain Injury...New as well as Alternative Treatment and Cultural Issues"

Our Guest is: Paul Berger-Gross, Ph.D. Director of Traumatic Brain Injury Program at St. Mary's Hospital for Children

[19:01:29] Mod!: Dr. Berger-Gross where can I get comprehensive treatment for a child, after he/she leaves that hospital center?
[19:03:06] Dr. Berger-Gross: While children can get some services through school, it is almost impossible to obtain the variety and intensity of services obtained in a hospital, while residing at home.
[19:04:02] mod1: Are there any agencies that can be of assistance?
[19:04:26] Dr. Berger-Gross: For example, Medicaid will pay for one type of rehabilitation therapy a day when visiting the outpatient department of a hospital. Your child may need several rehab modalities. There are many agencies that can be of assistance. Advocacy groups, like BIA, BISociety, CRA can provide support. Hospital rehab depts can provide rehab. there are programs for finding services like Resources for CHildren with Special Needs. ANd the CSE within the schools can help
[19:05:13] mod1: Rail: What are the most divergent cultures that you have found in dealing with TBI?
[19:09:32] Dr. Berger-Gross: I have been asked about divergent cultures. Two cultural elements stand out in my mind. Among some orthodox Jewish and Muslim families, contact between children of different sexes may be expected to be very limited. This type of isolation is difficult to manage in a hospital or hospital school setting. Another frequent cultural difference is seen in children is a complete inexperience with living separated from their parents, even for brief periods.
[19:07:21] Rail: How often do 'minor' head injuries in infants turn out to be more serious as time goes on?
[19:11:39] Dr. Berger-Gross: The minor head injury question in infants is quite difficult to answer. Their is no large body of research on the subject and it can be difficult to monitor markers of injury severity in an infant (there is no GCS). Neurologic markers, like MRI images of course are relevant
[19:13:49] mod1: PattiSue: I've been researching hyperbaric oxgen therapy but have only seen the research done with adults. Does it work with children too?
[19:14:25] Dr. Berger-Gross: PattiSue I have also been interested in hyperbaric treatment. From what I have read it is widely used in treating adults in Europe. I have also spoken personally to families of adults with "miracle" stories. But, of the three very seriously injured children we have sent out from my hospital, none have had a substantial response.
[19:15:38] mod1: jmaff: What are some of the newest advances in treatment of tbi children?
[19:17:11] Dr. Berger-Gross: There have been some exciting new work in the physical realm. Constraint Induced Movement Therapy is bringing hope of big increases in upper extremity functioning in children with one side more affected. The Lite Gait has changed the way we teach walking to injured children. I could go on...
[19:19:14] mod1: George: I'm curious about Dr. Berger-Gross's interest in "alternative treatments" Please explain.
[19:20:39] Dr. Berger-Gross: I am interested in using herbals, like St. John's Wart, rather than SSRI's. This comes up especially where there is a cultural sensitivity to "drugs" for kids, and a "natural" remedy might be acceptable. Other alternative treatments include EEG biofeedback, and different pain interventions (e.g., magnets, therapeutic touch)
[19:21:03] mod1: PattiSue: Constrait induced movement meaning forcing the use of the affected limb?
[19:22:43] Dr. Berger-Gross: PattiSue you are correct. CIMT is the limitation of use of the unaffected limb while training the increasing accuracy and power of the affected one.

[19:24:06] Mod1: Please recognize that all information shared here is very general - and You Must review any therapeutic alternatives with your own physician first.  These are the opinions of Dr. Berger-Gross and that you should always consult with your own Doctor.

[19:22:54] mod1: Could you provide a list of Pediatric references that we can post on the web site?
[19:24:08] Dr. Berger-Gross: One terrific reference is the guide to TBI written for educators, and available for free from the NY State Dept. of Education
[19:25:30] mod1: Rail: Dr. Berger-Gross - your explorations of "natural" therapeutic alternatives must be backed by some literature? Could you transmit that to us so that we can incorporated that int the Web Site?
[19:27:24] Dr. Berger-Gross: There is certainly a literature supporting the use of St. Johhn's Wart in mild depression, but like most psychiatric applications in tbi (much less pediatric tbi) there is no research literature to guide a clinician.
[19:26:47] mod1: Ben: Are there any chances that a tbi suffered by a child will have better outcome because the child is still growing?
[19:28:40] Dr. Berger-Gross: Ben your question is both interesting and complex. The answer is yes and no. Generalized severe injuries in children tend to have worse outcomes. Focal, or localized injuries in children tend to have better outcomes than in adults.
[19:30:30] mod1: George: In the interest of "free speech" Dr. Berger-Gross your application of alternative treatments (i.e., therapeutic touch and magnetic therapies) are utilizing purely a placebo effect and have no solid scientific backing.
[19:31:33] Dr. Berger-Gross: George, my feeling about therapeutic touch is close to yours, but that is not the response of many of our patients. Also, the tone of what you say betrays that you have not followed some of the research in this field. There are now several double blind cross-over studies of magnet therapy in pain conditions. These are in major medical journals.
[19:32:13] mod1: Ben: What are some of the treatments on the horizon for TBI in children?
[19:33:57] Dr. Berger-Gross: Ben, I think that there is going to be an increase in the knowledge of what metabolic changes occur following an injury that limit recovery. Already there are controlled studies suggesting that zinc supplements may alter metabolic deficits and improve recovery. But I think there will be more CNS related substances that are identified.
[19:34:15] mod1: PattiSue: How common is the baclofen pump used with children used with spasticity that you have seen?
[19:35:27] Dr. Berger-Gross: Because my program treats very severely injured children, a large proportion are obtaining baclofen pumps. It has been a mixed bag so far. Many have not yet done as well as they did with the loading "test" dose.
[19:36:35] mod1: Carol: Saw you response to Ben's question about Focal injuries why do that respond better?
[19:37:22] Dr. Berger-Gross: Carol asks why focal injuries have better recoveries in children. I think it is easiest to start at the other end. A global injury in a child is affecting the subsequent learning of an individual who has not yet acquired much. Whereas a small injury really does offer the compensatory use of other brain areas that are still in their developmental stages.

[19:37:40] mod1: Rail: Please explain what you just said-"loading test" dose.?
[19:39:01] Dr. Berger-Gross: Before a Baclofen pump is surgically implanted, the neurosurgeon will test whether an intrathecal (into the spine) dose of baclofen will "work" to alleviate spasticity. If the injected test dose works, it is presumed that an implanted pump will have the same affect.
[19:39:21] mod1: What are some of the cultural issues in the treatment of children?
[19:40:45] Dr. Berger-Gross: Cultural issues include how close families will allow treaters to get to their children, how a community feels about psychoactive medicines, how families feel about the role of prayer or spiritual interventions....

[19:42:05] Dr. Berger-Gross: PattiSue wanted to know if therapy levels are increased with implanting of the baclofen pump. Indeed, the neurosurgeon will usually ask for high levels of physical therapies to accompany adjustments in baclofen dosage.
[19:42:52] mod1: Patricia: How sensitive to these cultural issues do you think most institutions are?
[19:44:09] Dr. Berger-Gross: I could give Patricia the boilerplate, "we strive to meet the cultural needs of everyone". But the truth, institutions have only so far they can bend. In my 6 years here, we have gone from allowing occasional overnight stays by parents, to allowing all parents to stay as much as they want. That is a big change. On the other hand, we cannot keep a teenage girl, from a culture that separates boys and girls, completely out of the sight of boy patients 24/7
[19:45:30] Dr. Berger-Gross: Culture is sooooooo broad

[19:44:42] mod1: How have you seen culture impact families of children with TBI?
[19:46:31] Dr. Berger-Gross: Some of our families believe that a "sick" child should be "taken care of", much like a baby. This stands in marked contrast to the theme of Rehabilitation, which one rehab nurse summarized to me as, "DO IT YOURSELF" Then there is the medical culture. We are used to making decisions, then presenting them to families. We need to try to make families part of the "team" that makes decisions about their children.: The best way to help the child and family to work with a therapy is to get everyone doing the same thing. One of the innovations at St. Mary's is our use of Parents and teachers in doing the Constraint therapies. This makes it less overwhelming for the child and better understood by the family.
[19:52:15] mod1: Do many parents veto treatment plans that are new and innovative?
[19:53:20] Dr. Berger-Gross: Parents rarely veto treatments we suggest, with the exception of psychiatric medications. Our children are often in terrible situations and the families are praying for any chance (see hyperbaric) that they may see a benefit.
[19:53:44] mod1: Patricia: Do you have family conferences to help with this?

[19:54:19] Dr. Berger-Gross: By the way, I never finished my much earlier thoughts about hyperbaric. As far as I know there is no controlled research suggesting it works.

[19:55:13] Dr. Berger-Gross: Patricia, St. Mary's has sponsored two conferences in the past year, and I regularly present at BIA and BISociety conferences, but I am worn out on running my own!
  Patricia the places I present can be seen by going to those organizations web pages, and they include NYC and Albany presentations.
[19:56:22] mod1: Patti Sue: What is the age range of the children you have?
[19:57:29] Dr. Berger-Gross: PattiSue the children at SMHC range from a couple of months to 18 years (though few that old)
[19:57:46] mod1: What is something you have observed that families need, but rarely access for themselves?
[19:59:06] Dr. Berger-Gross: I find that families become overwhelmed by the care taking responsibility of their disabled youngsters. Yet, few families connect with respite services. St. Mary's, UCP, YAI and others provide "time off", or respite to some families.
[19:59:37] mod1: Well, I see that our time is up and I want to take this opportunity to thank Dr. Berger-Gross for an excellent evening and hope that he will return with us again in the future. Thank you and good night and be safe.
[19:59:57] Dr. Berger-Gross: Good night all